Podcasts about Genome project

In this episode, our guests explore the impact of genetic discoveries on inherited retinal dystrophies, in particular retinitis pigmentosa (RP). The discussion highlights a recent study that identified two non-coding genetic variants linked to RP, predominantly in individuals of South Asian and African ancestry. The conversation highlights how advances in whole genome sequencing are uncovering previously hidden causes of genetic disease, improving diagnostic rates, and shaping the future of patient care. It also addresses the challenges faced by individuals from diverse backgrounds in accessing genetic testing, including cultural barriers, awareness gaps, and historical underrepresentation in genomic research. Our host Naimah Callachand is joined by researcher Dr Gavin Arno, Associate Director for Research at Greenwood Genetic Centre in South Carolina, Kate Arkell, Research Development Manager at Retina UK, and Bhavini Makwana, a patient representative diagnosed with retinitis pigmentosa and Founder and Chair of BAME Vision. We also hear from Martin Hills, an individual diagnosed with autosomal dominant retinitis pigmentosa. To access resources mentioned in this episode: Access the Unlock Genetics resource on the Retina UK website Visit the BAME vision website for more information and support Find out more about the groundbreaking discovery of the RNU4-2 genetic variant in the non-coding region which has been linked to neurodevelopmental conditions in our podcast episode   "Discoveries like this lead to better clinical management. We understand better the progression of the disease when we can study this in many individuals from a wide spectrum of ages and different backgrounds. We can provide counselling as Bhavini was talking about. We can provide patients with a better idea of what the future may hold for their eye disease, and potentially, you know, we are all aiming towards being able to develop therapies for particular genes and particular diseases."   You can download the transcript or read it below. Naimah: Welcome to Behind the Genes.   Bhavini: The few common themes that always come out is that people don't really understand what genetic testing and counselling is. They hear the word counselling, and they think it is the therapy that you receive counselling for your mental health or wellbeing. There is already a taboo around the terminology. Then it is lack of understanding and awareness or where to get that information from, and also sometimes in different cultures, if you have been diagnosed with sight loss, you know blindness is one of the worst sensory things that people can be diagnosed with. So, they try and hide it. They try and keep that individual at home because they think they are going to have an outcast in the community, in the wider family, and it would be frowned upon).  Naimah: My name is Naimah Callachand and I am Head of Product Engagement and Growth at Genomics England.  I am also one of the hosts of Behind the Genes. On today's episode I am joined by Gavin Arno, Associate Director for Research at Greenwood Genetic Centre in South Carolina, Kate Arkell, Research Development Manager at Retina UK, and Bhavini Makwana, patient representative.  Today we will be discussing findings from a recently published study in the American Society of Human Genetics Journal which identified two non-coding variants as a cause of retinal dystrophy in people commonly of South Asian and African ancestry. If you enjoy today's episode, we'd love your support. Please like, share, and rate us on wherever you listen to your podcasts.  Okay, so first of all I would like to ask each of the three of you to introduce yourselves. Bhavini, maybe we'll start with you.  Bhavini: Hi, I'm Bhavini Makwana, patient representative, and also Chair of BAME Vision. I have other roles where I volunteer for Retina UK, and I work for Thomas Pocklington Trust.  Naimah: Thanks Bhavini. Gavin.  Gavin: Hi, my name is Gavin Arno, I am Associate Director for Research at the Greenwood Genetic Centre in South Carolina, and I am Honorary Associate Professor at the UCL Institute of Ophthalmology in London.  Naimah: Thanks Gavin. And Kate.   Kate: Hi, I'm Kate Arkell, Research Development Manager at Retina UK.   Naimah: Lovely to have you all today. So, let's get into the conversation then. So Gavin, let's come to you first. First of all, what is retinitis pigmentosa and what does it mean to have an inherited retinal dystrophy?  Gavin: So, retinitis pigmentosa is a disorder that affects the retina at the back of the eye. It is a disease that starts in the rod photoreceptor cells. So, these cells are dysfunctional and then degenerate causing loss of peripheral and night vision initially, and that progresses to include central vision and often patients will go completely blind with this disease. So, retinal dystrophies are diseases that affect the retina. There are over 300 genes known to cause retail dystrophy so far, and these affect different cells at the back of the eye, like retinitis pigmentosa that affects the rods. There are cone rod dystrophies, ones that start in the cone photoreceptors, macular dystrophies that start in the central retina, and other types of retinal dystrophies as well.  Naimah: Thanks Gavin. And Bhavini, just to come next to you. So, you received a diagnosis of retinitis pigmentosa at the age of 17 after a genetic change was found in the RP26 CERKL gene. At this time only ten other families in the UK had been identified with this type of genetic alteration. Would you mind sharing a bit more about your journey to your diagnosis?  Bhavini: Yeah. So, at the age of 17 is when I got officially diagnosed with retinitis pigmentosa, but leading up to that I was experiencing symptoms such as night blindness. So, I struggled really badly to see in the dark, or just in dim lighting, like this time of the year in winter when it gets dark quite easily, all my friends from college could easily walk across the pavement, but I struggled. I was bumping into a lot of things. Like things that I wouldn't really see now that I know my peripheral vision, I was losing that, so like lamp posts or trees or bollards, I would completely miss or bump into them. I was missing steps, and had a really, really bad gaze to the sun. Like, everything was really hazy. That continued and I just put it down to stress of exams. You know, just given that age and where I was at the time of my life. But then it kind of continued. So, I went to the see the optician who then referred me, and after months of testing I got diagnosed with retinitis pigmentosa. Back in the late 90s when I was diagnosed there wasn't really anything about genetic testing, or cures., or treatments. I was basically just told to get on with it, and that was it.   It was only until about 15/16 years later I came across Retina UK, started understanding what retinitis pigmentosa is, and what it means, and then when I was offered genetic testing and counselling at one of my annual Moorfields appointments, they explained to me what it involved, what it could mean, what kind of answers I would get, and I agreed to take part. It was a simple blood test that myself and both my parents took part in.      Naimah: Thanks for sharing that Bhavini. So, I know you were able to receive a diagnosis through whole genome sequencing in the 100,000 Genomes Project after the alteration in the gene was found, and this was found in the coding region of the genome. But in this study that we are talking about in this podcast, we know that the two genetic changes that were found, they were in the non-coding region of the genome. Gavin, could you tell me in simple terms what the difference is between the coding and non-coding region of the genomes and why these findings are significant in this case?   Gavin: Yes, sure. So, the human genome is made up of about 3 billion letters or nucleotides which are the instructions for life essentially. Now, within that human genome there are the instructions for roughly 20,000-25,000 proteins. This is what we call the coding genome. These are the bits of DNA that directly give the instructions to make a protein. Now, we know that that part of the genome is only roughly 2% of the entire genome, and the remaining 98% is called the non-coding genome. Now, we understand that far less well. We have a far poorer understanding of what the function of the non-coding genome is versus the coding genome. So, typically molecular diagnostic testing or genetic testing is focused on the coding genome, and historically that has been the fact. Now with advances in genome technologies like whole genome sequencing and the 100,000 Genomes Project, we are able to start to look at the non-coding genome and tease out the previously poorly understood causes of genetic diseases that may lie within those regions of the genes.   Naimah: Thanks Gavin, I think you have just really highlighted the possibilities available with looking at the non-coding region of the genome.  Kate, coming to you next. I wanted to talk about the importance of uncovering and understanding genetic causes of inherited retinal dystrophies, and how do discoveries like these change the landscape of care for patients with inherited retinal dystrophies?  Kate: So, getting a genetic diagnosis can really help families affected by inherited retinal dystrophy. It helps them and their ophthalmologists to better understand their condition, and in some cases gain some insight into possible prognosis, which helps people feel a lot more in control. It can also potentially inform family planning decisions and even open up options around access to reproductive technologies for example, not only for the individual, but sometimes also for their close relatives. Of course, researchers are making great strides towards therapies, some of which have reached clinical trials. But a lot of these approaches are gene specific, so for people who know their genetic diagnosis, they are more able to recognise research that is most relevant to them and quickly pick out potential opportunities to take part. At the moment it is still the case that around 30% of our community who have a genetic test will not receive a clear result, and that can feel very frustrating. So, the more discoveries like this that are made, the better.   Naimah: Thanks Kate.  So, now we are going to hear a clip from Martin Hills, our Retina UK patient representative who has been diagnosed with autosomal dominant retinitis pigmentosa. Martin has undergone genetic testing and shares more about his experience.  Martin: My name is Martin Hills, and I was officially diagnosed with autosomal dominant retinitis pigmentosa in 2001, and because of that I immediately had to stop driving which made a huge impact both on myself and my family.  My eyesight has slowly deteriorated over the years. It first started with difficulty seeing at night, and also playing some types of sport, which I think probably was in my 20s. My peripheral vision has been lost slowly and now has completely gone. Fortunately, I still have some reasonable central vision left which is a great help. I am registered as severely sight impaired, and I am also a symbol cane user. My father and aunt were both diagnosed with this condition, and my daughter has been relatively recently, as has altogether eight members of our wider family, and that also includes two younger generations. In 2015 I went for genetic counselling and testing and at that time it was for 176 genes known to be associated with retinal dystrophies. I believe that has now gone up to about 300, but at the time they couldn't recognise what my faulty gene was, and that has still been the case to my knowledge to date.   I have also been part of the 100,000 Genome Project along with several others of my wider family, and I am also a participant in the UK Inherited Retinal Dystrophy Consortium RP Genome Project, which has been sponsored by Retina UK. The impact of not having a positive genetic test result is quite interesting and has really been a rollercoaster. I guess it is all about hope, and to start with when I knew I was going to be genetically tested, I think my first reaction was optimism, and I think if you have a positive test result, that is a real hope for the future. I think that is quite exciting particularly as things seem to be progressing so rapidly. But because I didn't get a positive result, the next reaction I had really was disappointment because I felt one step behind people with a positive result. Of course the natural reactions are one of frustration, and then I guess followed by realisation of the situation, and heading towards trying to adjust and making coping strategies for the future.  I still feel that genetic testing for all forms of medical conditions is so important and has a huge future in understanding and then potential treatments for so many medical issues. I guess it might be a bit too late for me, but if I can contribute to finding a restorative treatment for the younger generations of my family, and for that matter other people, then I think that is good enough for me.   Naimah: So, we have just heard from Martin that although he has not been able to have a positive genetic test result, his involvement in various studies may have benefits in helping others find treatment. So, I guess on that point Bhavini, maybe you could comment, or ask you how you felt whenever you were about to get a diagnosis through whole genome sequencing?  Bhavini: Yes. When I got called in almost three and a half years after the testing that took place was a massive, massive relief because not only did I get genetic counselling before the testing period, but I got called in and I spoke to a genetic counsellor who explained what they had been able to find and what kind of RP it was, how it would progress, and just answer so many questions. I am the mother of two daughters and even having two children, I lost a lot of sight after my first daughter, but at that time there wasn't any evidence or there wasn't any … you know, there was nothing I even knew about what questions to ask or anything, so I did go on to have a second child and drastically lost more sight. I had always been told, because the lack of awareness and understanding of RP in my family, and I am one of four children, and I am the only one that has it, so there is no other family history. Now I know it could have skipped generations, but I was always told things like it was karma. I must have done something in my past life. I was told to kind of have these herbs or these remedies to cure my sight loss, you know my RP. I was even desperate enough to kind of …  all these bogues treatments that you find online. You know, anything. I was so desperate to find anything that would help me.   When I received that testing and the counselling, it explained so much about how my daughters may or may not be affected, how they are carriers, and that was explained to me, how it would progress. So many questions and worries that I had for almost a decade and a half, they were answered. And not only for me, for my family, and all those people that told me all these sorts of things that I used to worry about that could have caused my RP. I was able to explain it to them and they understood that it was nothing to do with me being bad in my past life. It was actually you know, there is something scientific about it. So, it kind of gave me lots and lots of answers, and actually I then created a private Facebook page just with my RP26 CERKL genetic that I have been diagnosed with, just to see if there is anybody else out there, because when I was diagnosed, I think at the time I was told there was only myself and nine other families in the UK diagnosed with this particular gene. Now, I haven't been that active on it, but you know there are people across the world who found my post and joined the group, and we share experiences about the age that we were kind of diagnosed, the kind of rate the symptoms have developed. It is so fascinating because we have got such similar experiences.   There is parents on there who are there on behalf of their children, and it is just so nice to see … I know it is RP, but the specific gene and the rate of which we have experienced all the symptoms, it is quite similar. So, it has been quite supportive and helpful and reassuring to my family including my daughters.  Naimah: That's incredible Bhavini and it's really nice that you have created that group and created kind of like a support network for all the other families that have been affected by the same genetic condition as well. Yeah, that's incredible. Gavin, I know the findings in the study show that the genetic changes in this study are more common in people of African and South Asian ancestry. So, so I want to understand why is this an impactful finding in the study?  Gavin: Yes, so Kate mentioned that around 30% of people with inherited retinal dystrophies who have genetic testing don't get a molecular diagnosis and we are working in my research lab and many other research labs to improve that. Now, that figure is very much higher in patients of for example African ancestry in the UK, and this is partly due to the fact that historically and even now genetic studies have been focused on European individuals and taken place in the US, and the UK, and Europe, and wealthy countries across the world. This means that people of African ancestry are poorly represented in genetic studies, not just genetic studies of genetic disease, but population studies as well. So, we have less of an understanding of the genetic variants found in the genomes of individuals of African ancestry. So, that means we solve less of the genetic cases, particularly at Moorfields we published a paper on this several years ago with the diagnostic rates in European patients versus those of African ancestry, and it was very, very much lower. So, we need to do better for those patients, and this study identified a cause of retinitis pigmentosa in 18 families of African ancestry who were recruited to the 100,000 Genomes Project.   This is a fairly large proportion of the patients with RP of African ancestry seen at Moorfields Eye Hospital, and when we contacted collaborators around the world many more families were identified, and I think we ended up publishing around about 40 families who were affected by this particular mutation. So, we can look at that variant, we can look at the DNA sequence around that variant, and we found there is a chunk of DNA around the mutation in the gene that was coinherited by all of those different individuals. So, this is what we call an ancestral haplotype. It's an ancient variant that goes back many, many generations and it has a fairly high carrier frequency in genomes of African ancestry. So, we think this will be a fairly significant cause of retinitis pigmentosa across the continent of Africa. And so, identifying it will enable us to provide a molecular diagnosis for those families. Potentially there will be many more families out there who don't know they have this cause of disease yet. They may be affected but they haven't yet received genetic testing.   But discoveries like this lead to better clinical management. We understand better the progression of the disease when we can study this in many individuals from a wide spectrum of ages and different backgrounds. We can provide counselling as Bhavini was talking about. We can provide patients with a better idea of what the future may hold for their eye disease, and potentially you know we are all aiming towards being able to develop therapies for particular genes and particular diseases. As Kate mentioned many of the gene therapies are gene specific, so if we identify a cause of disease that is predominant like this and affects many, many people, then of course there is more interest from the pharmaceutical industry to develop a therapy for that specific gene.  Naimah: Thanks Gavin. I think that really does showcase how impactful these findings really are. Kate, can I come to you. So, Gavin touched on it there that people with African and Asian ancestry are significantly less likely to get diagnosed, but why is it important to ensure that these groups are represented in the genomic datasets?  Kate: So, we need to ensure that genetic testing and diagnostic accuracy works for everyone, and not just those of European ancestry. So, as Gavin said if the datasets don't reflect the genetic variations seen in African or Asian populations, then the tests based on those data are more likely to give incomplete results for those groups of people. We really need a diverse range of genetic information for researchers to work on. As it is clear from this study's results, populations from African backgrounds for example may have unique genetic mutations linked to retinal dystrophy. So, if those are really underrepresented in datasets based on European populations, that is obviously going to present a problem. Gavin mentioned access to treatment. We need to overcome some of these disparities in healthcare access, and   inclusion of broad spectrum of genetic data is actually a foundation for that.   Naimah: Thanks Kate.  So underrepresented groups are often less likely to know about genetic testing due to a combination of social economic and systemic factors that create barriers to access information. Cultural taboos can also play a significant role in shaping attitudes towards genetic testing, and I think Bhavini you kind of touched on this slightly with some of your experiences. I wonder, did you experience any of these cultural taboos?  Bhavini: Yes, some of them, but I think by the time I was informed about what genetic testing and counselling is I had come across Retina UK and I had already started having that background knowledge, so when that was offered to me, I actually had a basic understanding. But as Chair of BAME Vision I work with a lot of ethnic communities, and when I speak about my own personal experience about receiving genetic testing and counselling, I kind of break it down into my own language, and the few common themes that always come out is people don't really understand what genetic testing and counselling is. They hear the word counselling, and they think it is the therapy that you receive counselling for your mental health or wellbeing.  So, again there is already a taboo around the terminology. Then it is lack of understanding and awareness, or where to get that information from. Also sometimes in different cultures, if you have been diagnosed with sight loss, you know blindness is one of the worst sensory things that people can be diagnosed with, so they try and hide it. They try and keep that individual at home, because they think they are going to have an outcaste in the community and the wider family, and you will be frowned upon, people will talk really bad.   So, it is not really common knowledge, so they don't even talk about it. So, there is a lot of layers to unpick there. That is one of the priority areas in 2025 that we at BAME Vision are going to be working on to try and raise that awareness in different communities about what genetic testing is, what it could mean, how to get genetic testing if it is not offered to you at your own clinic. There is a lot of work I know Retina UK have done, so working with them, and how we can reach different communities to raise that awareness.  Naimah: That's great. You have touched on how important the education piece is. I wonder, do you have any other examples of how healthcare providers and genetic counsellors might better engage communities to ensure that they are receiving the care that they need?  Bhavini: Yeah, absolutely. So, I think having information in different languages is essential, and I don't expect to have lots and lots of leaflets in different languages. Whether it is audio form or whether there is different professionals within that setting that speak different languages that can communicate to those patients, or even their family or friends that could translate. I think language is definitely something. And having representation, so like different people who have accessed this and sharing their story and going out into community groups and sort of sharing those messages, is definitely what has been working for us, and we have been doing that on other topics that we have used.  Naimah: Yes, they all sound like really important ways to try and engage with different communities. You have already mentioned how amazing that Retina UK have been and the support that you have received from them. So, I wonder Kate, if you could tell us a bit more about the support that is available for those with inherited sight loss, and how these resources can support people from underrepresented groups as well.  Kate: So, we have a range of support services at Retina UK most of which involve our fantastic team of volunteers, one of whom is Bhavini, who are all personally affected by inherited retinal dystrophy themselves. So, they are all experts by experience so to speak. The team also does include members of the Asian community as well. So, if somebody makes a call to our helpline, they will be able to speak to somebody who genuinely understands what they are going through, which can be a lifeline for those who are feeling isolated and especially I think as Bhavini mentioned, if they feel unable to talk openly with their own family and certainly within their community. We have a talk and support service that offers ongoing more regular telephone support as well as in-person and online peer support groups where people can make social connections with others in similar situations. I think Bhavini has mentioned that she herself runs our London and Southeast local group.  We also have an information resource called Unlock Genetics. That explains genetics in understandable language and clearly explains how people can access testing and what that will involve. So, we have stories on there from people who have gone through the process and talk about that. So, that is available on our website, and we can provide it in audio format as well.  Naimah: So Gavin, looking to the future, what does this research mean for patients with sight loss and their families? What does this mean in the future?  Gavin: So, I think now that we have access to whole genome sequencing through projects like the 100,000 Genomes Project, we are able to start the process of understanding new causes of disease that are found outside of the coded region.  So, we can now look for non-coding variants that cause disease which was previously not possible because genetic testing was focused on 2% of the genome. As we make discoveries like this these will inform future studies. So, the more we identify this type of variant and are able to functionally test the effect on the gene or the protein, we are able to use that information to lead future tests. What this needs is large population datasets to be able to analyse these sorts of variants at scale. The more genomes we have the better our understanding will be of our population frequencies, and the key thing is here for inherited retinal dystrophies, all of these variants that we are identifying are very, very rare. So, we only find them in a very small number of individuals affected with disease, and an infinitely smaller number of individuals in the unaffected general population. So, the larger that population dataset is that we can study, the better we can understand the rarity of these variants and pick those out from the many, many millions of non-pathogenic or harmless variants that we find in the genomes of all the individuals.  Naimah: Do you think the paper will help lead the way for diagnosis of other conditions in African and South Asian communities?    Gavin: Yes. The better we understand causes like this, and we are now at the point where most of the genes that cause retinal dystrophy have been identified already, so the remaining causes to be identified will be these more difficult to find cases, non-coding variants, structural variants, which we haven't touched on today which are larger rearrangements of the genome. These things are harder to find, harder to interpret, so the more that we find like this, the better our ability will be to interpret those sorts of variants. There are many similar findings coming out of genome studies like 100,000 Genomes Project. For example, there was a significant finding recently published on a non-coding RNU gene which causes a significant proportion of neurological disorders in the 100,000 Genomes Project. You need these studies to be able to drive forward the research in areas like this.   Naimah: Thanks Gavin, and the discovery that you are mentioning is the RNU4-2 gene that was discovered earlier this year. You can hear more about that on our other podcast on our website which is ‘How has groundbreaking genome work discovery impacted thousands far and wide' to learn more about that as well. But yeah, I agree it is another really great example of how impactful these findings can be. Okay, we'll wrap up there. Thank you to our guests Gavin Arno, Kate Arkell, and Bhavini Makwana for joining me today as we discussed the findings from a recent study which has identified genetic changes responsible for retinal dystrophy, and people commonly of South Asian and African ancestry. If you'd like to hear more like this, please subscribe to Behind the Genes on your favourite podcast app. Thank you for listening. I have been your host and producer, Naimah Callachand, and this podcast was edited by Bill Griffin of Ventoux Digital.

The Conversation Genome Project by Afterparty represents an evolution of subnet planning, design and execution. With months on testnet under their belt, a capable and experienced team leading their development and a revolutionary approach to incentivizing intelligence, David Fields and team are poised to democratize access to personalized AI using Bittensor.  https://conversations.xyz https://twitter.com/conversationgen https://twitter.com/DavFields https://github.com/afterpartyai/bittensor-conversation-genome-project https://taostats.io/validators/bittensor-guru-podcast/ https://bittensor.guru  

India announced recently, that it has completed the 10,000 genome project – a reference database of whole-genome sequences, from people in India. About 20 institutions were involved in the project. India has a population of 1.3 billion with over 4,600 population groups, many of them endogamous.  This project is seen as an important step to find out about genetic variants that are unique to India, to customise drugs and gene-based therapies, give us answers about certain diseases, and to provide a deeper insight into the population's diversity, and perhaps into genetic predispositions to disease that we may have.  What are the implications of this genome sequencing? How far does India have to go to reap its potential benefits? What are the ethical concerns around the sharing of this data? Is India well-enough equipped to ensure health data privacy of individuals?    Guest: Shambhavi Naik, PhD Head of Research and Chairperson of Advanced Biology Programme, Takshashila Institution  Host: Zubeda Hamid  Edited by Sharmada Venkatasubramanian. 

In this episode of ATP, Shambhavi Naik and Saurabh Todi discuss the recent completion of the 10,000 Genome Project and the importance of collecting such data for medical research. Do check out Takshashila's public policy courses: https://school.takshashila.org.in/courses We are @‌IVMPodcasts on Facebook, Twitter, & Instagram. https://twitter.com/IVMPodcasts https://www.instagram.com/ivmpodcasts/?hl=en https://www.facebook.com/ivmpodcasts/ You can check out our website at https://shows.ivmpodcasts.com/featured Follow the show across platforms: Spotify, Google Podcasts, Apple Podcasts, JioSaavn, Gaana, Amazon Music .Do share the word with your folks  See omnystudio.com/listener for privacy information.

There are a range of outcomes from a genomic test. The results might provide a diagnosis, there may be a variant of uncertain significance, where a genetic variant is likely the cause of the condition, or there might be no particular gene found that is linked to the phenotype or clinical condition - also known as a "no primary finding" result. In this episode, our guests explore the impact of a "no primary finding" result on families, discussing the common experiences and expectations of parents and patients who undergo that genetic testing, and the role that hope plays in the experiences of children with rare and undiagnosed conditions. Today's host, Lisa Beaton, member of the Participant Panel at Genomics England is joined by Dr Celine Lewis, Principal Research Fellow in Genomics at UCL, Great Ormond Street Institute of Child Health, Jana Gurasashvili, a Genetic Counsellor, and Louise Fish, CEO of Genetic Alliance.   "I think it's also really important to add that hope isn't necessarily lost when you don't get a diagnostic result. And in a sense, what can be really helpful is for genetic counsellors to reframe that hope...sort of giving it a different context."   For more information on the SWAN UK project which supports families with children that have been through genetic testing but have not found a result following that genetic testing, visit the website. Read more about the study by Jana Gurasashvili and Dr Celine Lewis: The disequilibrium of hope: a grounded theory analysis of parents' experiences of receiving a "no primary finding" result from genome sequencing.   You can read the transcript below or down it here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/Hope-for-those-with-no-primary-findings.docx    Lisa: Hello, welcome to the G Word.  Lisa: I think in the back of my mind, subconsciously, I had hoped that when we eventually got a diagnosis, it would – I don't know, bells and whistles, balloons going off, fireworks, etc. And then the experience of a letter thumping on the doormat, and I recognised the postmark quite quickly, and it was at that moment I suddenly thought, “Oh gosh, I haven't buried all these feelings of hope.” Because I opened that letter with quite trembly hands, and then this diagnosis or lack of diagnosis, you know, nothing had been found, and it was a bit… I don't know if it's been described as like a nail in the coffin experience, because I really hadn't realised I was still clinging to this hope all that time, and then again it was, you know, another, “No, nothing's there. Lisa: My name is Lisa Beaton and I'm a member of the participant panel at Genomics England. On today's episode, I'm joined by Dr Celine Lewis, the principal research fellow in Genomics at UCL, Great Ormond Street Institute of Child Health, Jana Gurasashvili, a genetic counsellor, and Louise Fish, the CEO of Genetic Alliance. Today we'll be discussing the impact on parents with children with rare conditions, who received a no primary findings result after diagnostic whole genome sequencing. If you enjoy today's episode, we'd love your support. Please like, share and rate us on wherever you listen to your podcasts. Can I ask all of us here present to introduce themselves, please? Celine: Hi everyone, I'm Celine, I'm a behavioural scientist in genomics at UCL Institute of Child Health, and I currently hold an NAHR advanced fellowship to look at the implementation of WGS, or whole genome sequencing, in the NHS. Jana: I'm Jana Gurasashvili and I'm a genetic counsellor at Northwest Thames Regional Genetic Service, and prior to that I was at Great Ormond Street, involved with consenting families to the 100,000 Genomes Project, and I also have an ongoing interest in the lived experience of patients and parents of genetic counselling and rare disease. Louise: Hi, I'm Louise Fish, I'm the chief executive of Genetic Alliance UK, and we are an alliance of around 230 charities and support groups that work with patients and families who have particular rare conditions. We also run a really longstanding project called SWAN UK, and SWAN stands for syndromes without a name. And the SWAN UK project supports families with children that have been through genetic testing but have not found a result following that genetic testing. So, it's clear they have a genetic condition, but science hasn't quite advanced far enough yet to tell us what that means and what that will mean for their child, and what that will mean for their family over the coming years. Lisa: And I personally can attest to the wonderful support that SWAN UK can offer because, as the parent of a still undiagnosed child, I have been involved myself with SWAN UK since my daughter was around the age of three to four years old. It's brilliant being a part of my big SWAN UK family. We first realised that there were some – I suppose something wrong with our daughter when she was around two weeks of age, but it wasn't something I could specifically put my finger on. I couldn't at that point have taken her to a doctor and said, “I don't know what's wrong but there's something wrong.” I just knew in my heart of hearts, probably because I have three elder children, that there were issues, and things weren't developing as they should. She cried a lot, she screamed a lot, she never seemed to be comfortable in any position when you held her, when she was asleep, when she was upright. It didn't seem to matter what you did, she was just a rigid, stuck child, for want of a better word. And all my mum senses were screaming, but it completely sounded ridiculous to take her to a doctor saying, “She feels wrong.” And I think that's quite a SWAN UK experience, from chatting to other families with similar situations. The parents just know that there's something not right, but it can be very isolating not to be able to identify kind of where that starts and what it is. In our case, it wasn't until our daughter was nine weeks old that things became much more obvious, that there were developmental concerns physically and medically, and at that point we went from my sort of mutterings that there was something wrong but I wasn't sure what it was, to a sudden hospital admission with quite a shocking turn of events. From something that had started out quite normally, as a routine visit to the baby clinic, to suddenly being seen by a troop of different paediatricians, and doctors coming in and out constantly, asking different questions, and sending us off all over the building for different tests and x-rays and imaging. And being given a partial diagnosis that our daughter had a condition called arthrogryposis, but it was clear that there was much more going on than that, and we would need referring to many more different fields. And that day really our diagnostic odyssey, for want of a better word, began. So actually, in terms of that diagnostic odyssey, many parents of children with rare undiagnosed conditions experience this, and when we agree to have genetic testing, we feel that we are going to get these answers straight away, and that every appointment that you go along to is going to be the one that brings you the answers. But certainly in our experience kind of 15 years on, that's not been the story at all. Celine, can I ask you to explain what the words no primary findings actually mean when a parent receives that regarding their child? Celine: So, there's a range of different possible outcomes from a genomic test. So, the results might provide a diagnosis to that patient and family, or other situations, there might be a variant of uncertain significance, so we don't necessarily know if the gene that we found, a genetic variant is the likely cause of the condition, or we might find no particular gene at all that we think is linked to the child's phenotype or clinical condition. So, that's what we mean really when we're sort of saying no primary finding. Lisa: Louise, would you be kind enough to explain what you think the impact of no primary findings means to families like my own, parents who don't have a genetic likelihood cause, just a gene thrown up to diagnose their child? Louise: Yeah, I think it's a huge challenge for families, and you'll obviously know that from your own experience. People go to have genetic testing hoping it will give them some answers, first and foremost, just to kind of understand, you know, what condition their child has and what the likely impact that's going to be on their child and on the child's life, and on the family's wider life. And I think one of the things that we really ask genetic counsellors and geneticists to do is help people understand before the genetic testing takes place that there may be nothing found from it, so that that kind of expectation is built in. Because people hope that they will get a diagnosis that will give them answers about what the impact of the condition will be on their lives. In a best-case scenario, access to a particular treatment that might be a huge help for their child, but at the very least, access to a range of services and support for their child. So, that kind of diagnosis is often seen by families as the key to unlocking a range of services and support that will help them and their families at what is the beginning of a lifelong journey. And I think when families get no diagnosis, there's a real concern on behalf of families, a, that they don't understand how their child's going to be affected by the condition. What we're really careful to say to families is, “Just ‘cos you don't have a diagnosis with a name, your child is still the same person they were before. They still have exactly the same bundle of needs as they had before, and you will still need to work with the NHS and with wider services to make sure that they can access speech and language therapy, and physiotherapy, and all of the services that they are going to need and you are going to need to help them live their lives to the full.” But I think that moment of not getting a diagnosis is when people feel I think real – the uncertainty continues, and uncertainty, we know, is a really hard thing to live with, and the lack of clarity about which services you'll be able to access. So, I think psychologically it's a massive impact on the family not to have the answers that they were looking for, or the key to the services that they were hoping would be there. Lisa: Thank you, Louise, yeah, I would definitely agree with that. We had a no primary findings result in I think it was 2019. It was a really bittersweet moment because my daughter's list of various different conditions kind of – by this point, named parts of difficulties for her spans over sort of two pages of A4, and yet on the letter back from the genomics service, it just says that, you know, nothing causative has been found. And so part of you is left wondering, well, how can there be all these different conditions or difficulties, and yet there's still nothing there? And I know personally, I had comments when she was much younger, every time a test came back, where people would say things like, “Oh well, that's great news,” and to some extent it was great news that something hadn't been found, but also if that hadn't been found, what was still out there? And that fear of kind of the unknown was extremely difficult. And also paradoxically, there was a sense of some very well meaning people saying things like, “Oh well, if they haven't found anything then there can't be too much wrong.” But yeah, I have a child who is tube fed and on multiple different medications, and cared for basically for 24 hours a day, so that doesn't really fit in with the picture of there not being very much wrong from a personal perspective. And I think it can make you as a parent/carer feel perhaps there's a tendency to downplay that there is an issue and that perhaps, you know, you're making it up, for want of a better word, and that sense of isolation around that can certainly be problematic. Celine, if I can come to you, that diagnostic odyssey, what are the common experiences and expectations of parents and patients who undergo that genetic testing from your perspective? Celine: Well, I think sort of parents go into genetics testing for a whole range of reasons really, and Louise has already alluded to many of these. Ones that I've come across in my own work include wanting to know why their child has a particular health problem, so that that child can access the most suitable treatments or therapies, or even access clinical trials. Even relief from guilt for many parents, a validation that the parents hadn't done anything wrong during their pregnancy to cause the child's condition, and that's hugely important really, to try and get that relief from guilt. Also to know whether future children might be affected by the same condition, and then more social reasons really, for example, making contact with other parents through support groups, or access to social and educational support. And I think there's also a drive from many parents to feel that they're doing everything absolutely possible for their child. I mean, particularly with something like the 100,000 Genomes Project, it was really a sort of first of its kind project, where patients were on a significant scale able to access this new whole genome sequencing technology. So, many of the parents taking part in that project felt like pioneers, and there was really a lot of expectations around whole genome sequencing in delivering a diagnosis for those parents who'd previously not been able to get hold of one. Lisa: Yes, I strongly can resonate with a number of the points you made there, particularly the feelings of guilt. I must have asked myself a thousand times whether, you know, something I did do, something I didn't do, something I thought of, something I hadn't thought of [laughter], all those questions that swirl around, particularly in the small hours of the night when you feel particularly alone. And yes, I can completely relate to that. And also although SWAN UK is primarily for children and parent/carers whose children don't have a diagnosis, actually a number of the parent/carers on there will have children with diagnoses that are so very rare that absolutely, you know, very, very little is known. They might be the only parent – the diagnosis, for want of a better word, they may have received may just be a series of kind of numbers and genetic dot-dashes, forgive my layman's terms there, but it may not actually help them any further along in terms of feeling that they know anything further or the direction of, you know, where that will lead their children, and that can feel very, very isolating, I'm sure, probably just as much for those of us who don't have that diagnosis. Louise: Yeah, just to add to that, I think that's absolutely right, Lisa, and I just want to give a shoutout – at SWAN UK, we tend to support families who don't have a diagnosis at all, or, as you say, a small number of families who do but have been part of the SWAN UK family for so long that we're very happy to keep them because of the support they're finding from other parents. We work really closely with another of our members, Unique, who are a charity that support parents in exactly the situation you've talked about, where people have finally got a diagnosis and it's that kind of relief of having a name, but it's a super long name, and you find out you're one of only three families in the world with that diagnosis. And so although there's a real I think comfort for people, perhaps if you have a five year old and you're meeting a family who have a 13 year old and a family of a 19 year old, then you start to see a little bit about how your child might develop, but there's not enough kids affected that you can be really certain about that. So, it gives you a little bit more information, but not the kind of wealth of information you were hoping for about how your child's going to be impacted by a particular condition, and what the future might hold for you and for them. So, SWAN UK and Unique very much work alongside each other to kind of support families on whichever part of that journey they're on, because there's still a huge amount of uncertainty for families with those super rare conditions, as you say. Lisa: Definitely, and I'm sure you'll be familiar, Louise, yourself if you get time to go on the online communities and seeing the question that pops up quite regularly when somebody has received a diagnosis of, “Can we still remain part of the SWAN UK family?” And they very much use that word, family, because I think they do feel that, although all our children are different, there are children with physical, medical, cognitive, a combination of all the above syndromes, conditions, etc, they feel that kind of embrace of all being in a collective club of rare and unique and undiagnosed, and that's very comforting to the members. Louise: Absolutely, yeah, I think that sense of belonging and being able to reach out to other families that you've been on that journey with for many, many years. You know, many of our families join when their children are like one or two, and they're still with us when, you know, their children are 26, 27 [laughter], and that sense of having that community and that family and that belonging is really, really important to people, I agree. It makes a big difference psychologically to be part of a community you can reach out to and ask the questions that perhaps you can't ask to other people. Lisa: Celine, can I ask you how many patients for the 100,000 Genome Project have had a no primary findings diagnosis back? Celine: Well, back in 2021, there was a paper published in the New England Journal of Medicine, which reported that, in the initial pilot for the 100K, a diagnosis was found for around 25 percent of rare disease participants, and other studies looking at the diagnostic yield of whole genome sequencing have put the number anywhere between 25 percent to 55 percent, depending on the clinical indication. And we know that even already from the 100,000 Genomes Project, this pioneering project has led to more than 6,000 diagnoses being identified, and that number will obviously continue to go up as they explore the data and gather new insights. However, that still obviously leaves a significant number that won't get a result from whole genome sequencing, as many as half of those rare disease patients, and that was really the basis of the study that Jana and I worked on. So, we felt that there had been so much research really looking at the experience of parents who do receive a genetic diagnosis, and that a lot of attention rightfully does focus on the amazing successes of the 100,000 Genomes Project and genomic medicine more broadly, but actually that there is a considerable number of patients and parents and families who don't get a result, and we felt that it was important that we also focus on those parents and patients, and try and understand their experiences. Lisa: Yes, you can feel, if your child, for example, is under multiple different care specialists, that it can be quite hard, when you've just got this list of different names of things that are wrong, that you feel very much still out on the limb and forgotten about. But it's clear that, from your work, you're identifying that and pointing that back to the specialists, the consultants, to remind them that these parents and these children are still finding their ways through. Can I ask you, Jana, the study that was conducted, what would you say the main things from that study told us? Can you describe some of the emotions experienced by the parents, and what challenges that they have faced along that receiving the no primary findings diagnosis? Jana: Yes. So, many participants really felt very strong disappointment and sadness on receiving that no result, and for many, it kind of reflected the feelings they had had when they first realised they had a child and there was no diagnosis for their condition. And as Celine said, this was such a new technology that people had invested a lot of hope in, and so many felt that it had been their last chance of finding a reason for their child's condition, and that they'd come to the end of the road with that no primary finding result. And, well, one person described it as another door shut. And people talked about the actual toll taken, the emotional and physical toll, and one person described feeling low for several weeks following the result. And some talked about the timing of the result. Somebody got it as a letter just before Christmas, and so their whole family holiday that they'd prepared was marred by getting that news just before Christmas. And it often seemed to leave parents feeling isolated and unable to contribute to normal parental roles, such as going to parent groups, etc, because they felt that other mothers particularly - as it's mothers we were speaking to, other mothers, their experience of motherhood was so incredibly different to their own, and they felt a lack of support. And one parent actually talked about wanting to lock everyone in the house just to escape the feeling of judgement and pity from outside the front door. And some parents talked about finding it hard when other people would post on support groups that they had got results from the 100,000 Genomes Project, which was very difficult. And some talked about hope as finding it hard to keep hopeful but needing to keep hopeful. So, they talked of hanging onto a little bit of hope, as though that was quite an intense thing, which I think, Celine, you'll agree, that made us able to kind of identify that hope was really part of a coping mechanism for this whole process of going through this diagnostic odyssey. Celine: Yeah, people sort of talked about not wanting to let go of hope and the importance of hope, and that without hope, there was no sense of wanting to continue this journey of trying to find a diagnosis, and that it was still very important to people. And I think that parents did understand that, even though a no primary findings result now, that doesn't necessarily mean that they won't get a diagnosis at some point in the future. So, there's obviously the opportunity to do future reanalysis of the genome, particularly as we understand more about the function of different genes, and as new genes are added to many of the panels that we're using in whole genome sequencing. So, I don't think not finding a result means that there is no hope in these circumstances, but for many parents, they did talk about hope being too painful, and not wanting to be let down again, and really preferred to focus on the here and the now rather than necessarily focus on the future. Lisa: Yes, I can only speak from my own experience here, but I think I primed myself to actually forget about going on the 100,000 genomes sequencing because, having undergone genetic testing for certain conditions that they were quite convinced my daughter had from around the age of four months through to around the age of three years, I'd gone to so many appointments and thought, “Oh, this'll be the time that I turn up and somebody will tell me this is what is the diagnosis.” And when I then joined the 100,000 Genomes Project in 2015 with my husband and my daughter, the genetic experience, the discussions that we had at the time were very helpful in that it was made quite clear to me that potentially we wouldn't get a finding, and actually that any information that did come forward was perhaps unlikely to be hugely beneficial to our family at that point. So, I was quite clear what potential finding would mean to us. But I think in the back of my mind, subconsciously, I had hoped that, when we eventually got a diagnosis, it would – I don't know, bells, whistles, balloons going up, fireworks, etc. And then the experience of a letter thumping on the doormat, and I recognised the postmark quite quickly, and it was at that moment I suddenly thought, “Oh gosh, I haven't buried all these feelings of hope.” Because I opened that letter with quite trembly hands, and then this diagnosis or lack of diagnosis, you know, nothing had been found, and it was a bit… I don't know if it's been described as like a nail in the coffin experience, because I really hadn't realised I was still clinging to this hope all that time, and then again it was, you know, another, “No, nothing's there.” And I think because of the work I've undertaken with SWAN UK as a volunteer, and being quite involved in wanting to sort of educate myself and learn more, I did understand that, even though we had no primary findings, it didn't mean that the study, everything was closed to us. It didn't mean, you know, that things won't still be looked for. But equally, at the same time, it just meant that we had nothing yet to pin anything on at that point. And I think it's quite hard to pick yourself up and dust yourself off again, to be like, “Okay, we're still here, we're still circling that drain,” as it were. I think actually that takes us on quite nicely really, about what role hope has in the experiences of a child with rare and undiagnosed conditions. And again if I can just say that there's hope and there's realism, and somewhere along the way, if you've been on the journey for quite a long period of time like ourselves, you have to try and find a way of living with that hope and realism all at the same time. So, we're still hopeful that one day we might get some answers, but we're realistic that day to day we need to focus on the difficulties or the experiences that my daughter has, so that we can manage to give her the skills to live her life to the very best of her abilities. Certainly, that's our experience. And also I think if I'd let myself dwell forever on not having a diagnosis or a pathway specifically for that, it would have been quite difficult to carry on, pick ourselves up every day. What would you think about the role of hope there, Louise? What would you say your experience is from chatting to fellow parent/carers? Louise: Yeah, I think you've described it really eloquently and better than I'll be able to do, but when we talk to people, the phrase I always have in my head is kind of hope for tomorrow and help for today are the two things that people are looking for. So, making sure that that hope for tomorrow's still there both in terms of, you know, the NHS being really clear that it will provide support for individuals without a diagnosis, and there may be opportunities for reanalysis in the future as science makes future progress. And, you know, there is progress being made so fast at the moment in genomics and that's really welcome. So, making sure that people who've already had whole genome sequencing but not found anything continue to have access to that potential reanalysis I think is really important. As you've rightly said, Lisa, as well, thinking through in terms of hope for tomorrow, the opportunity to take part in clinical trials and to make that as easy as possible where treatments are being delivered, to have the opportunities to take part in trials for non-condition specific treatments, whether that's for epilepsy, which affects people across a whole range of conditions, or sleeplessness, which affects people across a whole range of genetic conditions. You know, there are both trials that only people who have a particular condition can take part in, and trials that are open more broadly, so making sure those opportunities are available as well, so that people have that kind of hope for the future. But alongside that, I think it's really important for the NHS to be clear with people about what help for today will continue to be available, and so we are working really hard with the NHS to emphasise the fact that when no diagnosis is possible, the NHS still needs to be clear to people about how they will be supported, whether that's through the genetics team or a particular discipline, perhaps the one that is the closest fit for their child's biggest need, whatever that may be, that they can still access more joined up care. So, you know, who is the person in the NHS, if you don't have a diagnosis, who's going to help you secure referrals to speech and language therapy, to physiotherapy, to learning disability nurses, and to the package of care that your child may need. Who is the clinician, if you don't have a clear diagnosis, who's going to be the person with the authority and the confidence to lead the multidisciplinary team, maybe up to 30 healthcare professionals who are going to support your child. You know, who is going to be the lead clinician that's going to pull that multidisciplinary team together and make sure that your child's not being prescribed stuff that's contraindicated, or that's going to help one element of their condition but make another element worse. So, we are really trying to work with the NHS to make sure they're thinking through, where will that support be for the family in terms of their healthcare. And alongside that, you know, many wider services like schools or social care or employers welcome the chance to talk to a geneticist or a genetic counsellor or nurse to understand what adjustments they might need to make for someone who clearly has a genetic condition but doesn't have a clear diagnosis. And so we're trying to kind of make sure the NHS is both focused on the kind of science side and making sure that the hope for future findings is there, but also the help side, and making sure that the right package of care is still available for families who clearly have a genetic condition. Lisa: Actually Louise, yeah, you've really summed it up excellently there, and whilst I am hugely grateful to the NHS and the various services, I can say, hand on my heart, my daughter has a huge number of professionals involved, both from the health side of things and social care side of things, and actually the person that kind of holds all that together is myself. And because we're under multiple different teams, every time a new medication, for example, is prescribed, I need to go back to our lead team, which in this case happens to be neuromuscular, and check that, for example, if gastroenterology have prescribed a medication, that it's not contraindicated from a neuromuscular side of things and so forth. It's all a bit like having sort of interlocking parts of a jigsaw, but perhaps no picture to follow [laughter], and that can be quite an isolating experience. And certainly, having chatted to fellow parent/carers, I know that's their experience as well. And I imagine, Celine and Jana, you found sort of similar experiences when conducting the research. Celine: Yeah, so my PhD actually was focusing on the sort of journey for parents as they go through the diagnostic process, and one of the things that came out really strongly from that body of work was how the parents were really carving their own care pathway, how they had to sort of push and fight to access services, but at the same time were the gatekeepers for their child's health. Having to make sure all the various teams and clinicians were kept up to date with all the different tests that they had and all the results. And, you know, at times, this could be really frustrating for a lot of parents, ‘cos they had to keep repeating their story over and over again, particularly ‘cos they didn't have a diagnosis. So, these parents really were having a very different parental experience to many of their friends and family, because their experience of being a parent to a child with an undiagnosed condition was really sort of as being a patient advocate, and as having to push and fight to access services. Lisa: Yeah, it's quite a unique experience. You are the specialist for your own child in that sense, I think would be the way I'd describe it. And I suppose over the years, I've got so used to sort of trotting out different medical explanations in terms that you can almost sound like you know what you're doing [laughter]. And a few times when I've been at medical appointments, and perhaps we've met a new specialist or consultant, they've said, “Oh, what's your field? What's your area of expertise?” And actually you just think, “No, I'm just a specialist in my own child” [laughter]. But that's quite an empowering feeling actually, so I guess that plays back into the feelings around hope and expectation, even with having an undiagnosed child. Lisa:    When I was recruited to the 100,000 Genome Programme, we didn't actually as a family receive genetic counselling specifically, and I know that this is something that is incredibly important to many families, and how that can support you sort of going forward. We were quite lucky in our experience in that we knew that our daughter was definitely going to be our last child, so we didn't have the thoughts and insecurities around potentially what it might mean for any future children that we had. But certainly as my daughter has got older and she's asking her own questions, and our older children are at a stage in life where they're looking at potentially having families in the future, I know that those things have come up, and we're just still exploring what that will mean in the bigger picture. But can you tell us, Jana, really what can genetic counsellors do to help parents feel less isolated and better to cope with the uncertainty surrounding their child's condition? Jana: Yes, well, I'm sorry to hear you didn't have any genetic counselling prior to going on the 100,000 Genomes Project, because that consent conversation right at the beginning, before the whole genome sequencing, is really important. It's important to know what the range of outcomes may be, so that it may be that you might get a result, you might get a variant of uncertain significance, or you might get no result. And parents in our study did suggest that their sense of isolation when they got a no primary finding result would have been alleviated if they'd known how many were not getting results. So I think in the longer run, it's 40 percent perhaps received a result, so that's 60 percent that didn't receive a result, so those parents were not alone, but they felt very alone. And some suggested if they'd just had a leaflet really explaining that, and explaining that they'd still contributed to research and that that had been, you know, a good outcome in a sense, then they would have felt better about it. So, a lot of work can be done before the testing really, to explore how you might feel on that range of results, and then that way sort of prepare parents for how they're going to feel, and perhaps that helps them to have things in place, to know that it might be a vulnerable time with that letter, although that was particular for the 100,000 Genomes Project, to get the result in a letter in that way, and as you described, after such a long time, that you'd been able to forget that you'd been on the project. But to actually be a little bit prepared that it make take its toll on you might actually help with preparing oneself. It also might be helpful to include ways of promoting ways to enhance health and wellbeing for parents in terms of practical support, such as those things that you're already attempting to access, like the respite services, school support, support groups, and thinking about psychological wellbeing and ways of managing stress, psychological support for parents, and possibly spirituality based resources as well. And focusing maybe on what is known about the child's condition even without a diagnosis, so what's likely to be beneficial, and support parents in actively coping, such as what research they might be able to access, and continued medical support. And also actually having a named person within the genetics service, so they have someone to go to for any follow-up that has a name, and so they don't feel isolated from the genetic service. And signposting to those external resources, such as SWAN UK, can be very important as well, of course. Celine: I think it's also really important to add that hope isn't necessarily lost when you don't get a diagnostic result. And in a sense, what can be really helpful is for genetic counsellors to reframe that hope, if you like. So, one thing that we talk about in our paper is that it might be useful for health professionals to ask a question such as, “In light of the new information that we now have from the whole genome sequencing result, what are you hoping for now?” So in a way, it's sort of reframing that hope, sort of giving it a different context. Lisa: Definitely, and I think one of the things as well is that, because potentially for when parents were first recruited to a study such as the 100,000 Genome specifically in this case, that it might be quite a length of time between that initial recruitment and when the actual result comes out. And of course, in that time, with the advances in genetics, it's sort of somewhat of a Pandora's box really, isn't it, in that we're almost kind of finding the information out quicker than we actually know how to process it and what it potentially means. So actually if there's a genetic counsellor available to speak to those parents, or for those parents to be signposted to somebody who can say, “Well look, since you were recruited, actually this is happening, that's happening,” or, “These research projects are happening,” personally, I can say that is going to be really helpful and handy, and would have been really useful. I just know that for myself anyway and my family, that if there was a leaflet or something that had given me a way of knowing how I could contact somebody in the future, that would be really helpful. What ways do genetic counsellors use in maintaining a delicate balance between not creating false hope but also providing meaningful support to parents? What would you say around that, Jana? Jana: I think as we've already touched on, it's that managing expectations from the outset when the test is offered. So, not generating too much hype or excitement, but setting those expectations, giving that information about the diagnostic yield. Also, informing parents that what people do experience has been described as a rollercoaster of emotions. It's normal. You might also want to explore people, not only what they're hoping for, but also the outcomes that they might be fearing, and giving them a chance to voice those, because they can be very powerful things as well. A diagnosis might not be what you want to hear, so there can be a lot of ambivalence around wanting a diagnosis when it might actually be a life limiting condition, that you didn't really want that certainty. And also helping parents to explore how not receiving a result might feel, so that they've actually rehearsed it a little bit, and where they might go to when they need a bit of extra support. So, they already know, “I go and talk to my friends, that's where I get my support from,” so that they're kind of ready for it, and that might help them with that sense of isolation, but also validating these feelings. So, it's okay, it's okay to have that dip, it's okay to feel, that it's something that many people experience. And creating a safe space for people to feel that, so if they want to talk to a professional or a friend, that those feelings are validated. And in that way, kind of with that pre-counselling really, helping parents to develop their own set of resources, so they've got those to draw on. And as you've mentioned, Lisa, it's like having your own resources also helps generate that feeling of empowerment and control. And as Celine has said, it's really facilitating parents through that passage of reframing what you're hoping for, reframing what the future looks like, if you had one picture of a future. You need to become comfortable with the future you're now looking at. Lisa: Thank you, Jana. Louise, if I can ask you really, we've already touched on the role that SWAN UK can play for parents dealing with undiagnosed rare conditions, but perhaps if you could home in on that and explain in more detail the main focus of SWAN UK, and what that can do for parent/carers. Louise: So, what SWAN UK primarily does is bring together parents who are in a similar situation. So, we have a team of amazing parent representatives, who Lisa is one, who help us shape the support that SWAN UK can provide, and really make sure that it's based on a really strong understanding of what it's like to be a parent of a child with an undiagnosed genetic condition, and an understanding of that kind of expertise that parents who have been on that journey themselves will bring. So, we have a series of Facebook groups. Some of them are for different regions, so people come into contact with other parents in their area who are going through similar circumstances. Some of them are more around age. So, you know, we have Facebook groups for parents who are waiting for a diagnosis or have got a new diagnosis, and then we have a group called SWAN Graduates, which is for children who are older and over 18, so their parents can come together and share their experiences. So, it's really to help parents be able to talk to one another, to share their experiences, to support one another, and often to ask for advice. They're often kind of practical questions about, you know, “My child needs this kind of wheelchair, has anybody been able to source that from somewhere?” “My child's having real difficulties eating at the moment, can anyone give some advice on this particular challenge?” “This thing someone else has faced, how did you approach it? Where did you reach out for support?” So, that peer to peer advice and support is really at the heart of SWAN UK. And then what we try and provide around that is access sometimes to information events, where there's particular issues that are affecting a lot of SWAN families. So, we hope over the coming year to have a series of information events targeted at families with children who don't have a diagnosis, and some of it is just trying to have social events and bring people together again. We've had, for example, an active dads group in Wales, who've been bowling and wanted to go axe throwing, and really they just want to come together with other dads who are in the same situation, and being able to talk to one another and provide emotional support to one another. So, that's kind of the nub of SWAN UK and what we do, and then alongside that, that kind of fits in with Genetic Alliance's wider goal, which is much more around campaigning for improved services. So for example, the Genetic Alliance UK team has worked really closely with commissioners in Wales, who actually commissioned the first SWAN clinic, which is in Cardiff. That was a two year pilot, to see what support could be provided both to help SWAN families get a diagnosis, but far beyond that, to make sure that the care for families who don't have a diagnosis is better joined up. And that we feel has been a real success. Again, there hasn't been a really high diagnostic yield, there have been very few new diagnoses, but the support provided to the families who are in contact with that clinic, in terms of helping them access better joined up care both from the NHS and from services more widely, has been brilliant. And we're currently working with NHS England in the UK, who are exploring an opportunity to commission two SWAN clinics in England. So, that trying to kind of improve services, and then the third aspect of that is just working generally with the new genomic medicine service alliances as they emerge across England, to try and make sure they are thinking through what support they will need to continue providing to families who've gone for whole genome sequencing in future, not through a research project like 100,000 Genomes, but just through routine clinical practice and routine clinical diagnostics, what support will they need to provide for families who go through that process and don't get an answer. And that won't change the support they will need from the NHS. It will just mean that perhaps that clinic needs to play a more active role in helping them access those services. So, all of that kind of campaigning to have better services for family who have an undiagnosed genetic condition continues as well. Lisa: So, I think one of the things really just to finish off today, is of course looking at the future. Considering advancements in technology, would you say that future reanalysis of the 100,000 Genome Project is going to yield additional insights? Celine, can I ask you to comment on that? Celine: Yes, absolutely. As we understand more about the role and function of different genes, and as new genes are added to the panels, we will definitely be able to provide a diagnosis for more parents and more families. But I think we don't yet necessarily know exactly what that reanalysis will look like, and it's not really clear yet how this will work in practice. Lisa: And Louise, would you have anything else to add to that at all really? Louise: No, I think it is just that hope for the future and kind of help for today. I think the NHS needs to be equally clear about, you know, there's some amazing investment by the UK government in genomic research, and that's brilliant and we want that to continue, but equally we want the investment to be taking place into routine clinical services and diagnostic services, so that we can talk to people both about the hope of potentially getting a diagnosis in future, but making sure that the help continues to be available for as long as they don't have a diagnosis, and that help for families who don't have a diagnosis is going to be just as important. And what we try to ask for is both real clarity around what the NHS can provide, and really clear signposting to organisations like SWAN for families that continue to not have a diagnosis. And again, just to give an equal shout out to Unique, who are able to support families who have an ultrarare diagnosis, where perhaps they're the only person in the country with that particular diagnosis, or one of a handful of families around the world. Signposting to that peer to peer support will continue to be a really important part of the process as well, so that families can help one another, learn from one another, and just give each other support that they are kind of sharing that same journey and walking alongside one another on that journey as it continues. Lisa: And bringing this podcast to a close, can I just ask you really, any final thoughts, anything that you would sum up from your experience of researching the no primary findings and where we now are today? Celine: I think the main thing for me is just to sort of make it clear to parents that a diagnosis isn't necessarily a magic wand, even though it is obviously very important to a lot of parents. But that even without a diagnosis, we still have the opportunity to manage patients' symptoms, and often a diagnosis doesn't make a substantial difference, because parents are sometimes left with a lot of uncertainties and a lot of unanswered questions. So I think, and as Louise and Jana have said before, it's really sort of on focusing what we do know, and thinking about what we can offer and what support we can provide to parents and families even without a diagnosis. Lisa: Thank you very much to our guests today, Jana Gurasashvili, Celine Lewis and Louise Fish, for joining me as we discussed the impact of a no primary findings result. If you'd like to hear more like this then please subscribe to the G Word on your favourite podcast app. Thank you for listening. I've been your host, Lisa Beaton. This podcast was edited by Mark Kendrick at Ventoux Digital, and produced by Naimah Callachand.    

29 February marks Rare Disease Day. This day is an opportunity for the rare community to come together to raise awareness of the common issues affecting those living with rare conditions. A rare condition is a condition that affects less than one in 2,000 in the population, and although rare conditions are individually rare they are collectively common. It is estimated that there are over 7,000 rare conditions. Around 80% of rare conditions have an identified genetic origin. In this episode of the G Word, our host Julia Vitarello, Founder and CEO of Mila's Miracle Foundation, is joined by Rich Scott, Interim CEO for Genomics England, and Ana Lisa Tavares, Clinical Lead for Rare Disease Research at Genomics England, as they discuss challenges for those living with a rare condition and the work being carried out across the genomics ecosystem to support them. Julia is the mother of Mila, a young girl who was diagnosed with a rare genetic condition called Batten Disease, and in this episode Julia takes us through Mila's story, and how she hopes to help many more families access treatments for their children.   "So when parents, children, are diagnosed whether it's a fatal or life-longing debilitating or difficult disease, if you know that what's being learned from your child both from just the genomics to the potential treatments that's helping the next child, that helps parents like me be able to continue living."   You can find out more about Mila's story in our previous podcast episode with Rich Scott, Julia Vitarello and Dr Tim Yu.   You can read the transcript below or download it here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/Rare-Disease-Day.docx  Julia: Welcome to the G Word So my life at that point seemed to just disappear in that moment, all the things that had mattered to me were gone; I knew there was something wrong with my daughter but I had absolutely no idea that a typical child who was outgoing and active and verbal and had friends could suddenly lose all of her abilities and die. My name is Julia Vitarello, and I'm your host for today's episode. Today joining me in conversation is Rich Scott, Interim CEO for Genomics England, and Ana Lisa Tavares, Clinical Lead for Rare Disease Research, also at Genomics England. Today we'll be discussing challenges for those living with a rare condition and the work being carried out across the genomics ecosystem to support them. If you enjoy today's episode, please like, share and rate the G Word on wherever you listen to your podcasts. The 29th of February marks rare disease day. This day is an opportunity for the rare community to come together to raise awareness of the common issues affecting those living with rare conditions. A rare condition is a condition that affects less than one in 2,000 in the population, and although rare conditions are individually rare they are collectively common. It is estimated that there are over 7,000 rare conditions. Around 80% of rare conditions have an identified genetic origin. Before I get into speaking with Rich and Ana Lisa, I wanted to share my story and my daughter, Mila's, story. My life as a mother started really like anyone else's, my daughter was perfectly healthy, her name is Mila. For the first three or four years of her life she was like any other kid. I live in Colorado in the United States, my daughter was a skier, she was a hiker, she was rock climbing, she was incredibly active and singing songs and swimming and riding bikes. But around four years' old she started tripping and falling, she started pulling books and toys up closely to her face; she started being covered in bruises, getting stuck on words and repeating her sentences and I brought her to about 100 different doctors and therapists around the United States to try to figure out what was going on with her. Around four years' old I started speaking with orthopaedic surgeons, with ophthalmologists, with neurologists, with speech therapists and each one of them, you know, told me pretty much that I was a crazy mom and that my daughter was typical and normal and that she would grow out of these sort of strange symptoms that she was having.      By the time that she was six years' old, I had had enough and I was crying on a regular basis, no doctor could help me and I was tired of lugging my daughter, who was now covered in bruises and tripping and falling and stuttering, together with my newborn son at the time, kind of around the country only to be told that I was crazy. And at that point at six years' old I brought her into the emergency room in the Children's Hospital Colorado, near where I live. She was in there for about a week and underwent a battery of tests and at the end of that week I was told that my daughter had a rare genetic condition called Batten Disease and that she would lose all of her abilities and die in the next few years. So my life at that point, first four years of my life seemed to just disappear in that moment, all the things that had mattered to me were gone. I knew there was something wrong with my daughter but I had absolutely no idea that a typical child who was outgoing and active and verbal and had friends could suddenly lose all of her abilities and die. After crying on my closet floor pretty much most of the day for a few weeks I picked myself up. I started to read white papers, I started to go online and learn about other rare conditions. I started to speak with parents that had fought for their children with physicians, with researchers, and did everything I could to kind of figure out if there was even a glimmer of hope. And what I was told at the time at the end of 2016 was that there is almost nothing that could be done and very little was known about my daughter's form of Batten Disease. But that there was a tiny glimmer of hope that we could maybe stop genetic disease, and that's all I needed. I started Mila's Miracle Foundation, which is a non-profit organization. I started telling Mila's story and taking care of my kids by day and trying to fight and learn and raise money by night and I started a gene replacement therapy because it was the only option that I could take on as we didn't know much at all about the disease, and by replacing it, it was kind of the only thing that I could do, but it was going to take many years and millions and millions of dollars and I knew that it wouldn't be in time for my daughter. Along the way, there was something a little bit unusual which was that my daughter had an auto recessive disease which meant that she needed to have a mutation in the same Batten causing gene from her mom, myself, and her father, and they could only find one of these two. That led me to learn about whole genome sequencing, which was kind of the most extensive way of looking at Mila's genome to figure out where this missing mutation was. And in that search I crossed paths with a Dr Timothy Yu at Boston Children's Hospital, and he volunteered with his lab to help me find this missing mutation that no other lab could possibly find. And within a few months and a lot of work, a lot of late nights and weekends and staring at screens, through whole genome sequencing, the team was able to find Mila's missing mutation and finally diagnose her fully with this rare form of an already rare Batten disease. That is where Mila's story changed and turned direction. At that point, a recently approved drug for spinal muscular atrophy was on all neurologists' minds at that moment because it had just been approved in the US by the FDA and in other countries, and it was a game changer, these children were dying and on respirators and in wheelchairs you know at the age of two and with this new drug they were actually living, many of them were living long lives and were active and happy and healthy and going to school. And Mila looking her whole genome sequence was able to kind of fit that same criteria, and so the doctors, including Dr Yu said, “What if we did the same thing for these children? What if we made a drug like this for Mila?” This drug called Antisense Oligonucleotides, or ASO seemed to be a good fit for Mila's mutation. And so a drug was made for Mila and named after her called Milasen and it was a race against time for an entire a year with a team of honestly hundreds of people across academics and industry, I was fighting to try to raise the money and awareness and working with a scientific team. And one year after Mila was diagnosed when she turned seven years' old, we moved to Boston and Mila began receiving Milasen, which was named after her, and only in that moment in time did I realise not only what a big deal this was for me as her mother, but what a big deal this was for science. She was the first person in the world to receive a medicine that was tailored just to one person and it was named after her because there was no-one else in the world they could find that shared that same mutation. When Mila began this, you know, I didn't know what to expect but I knew that she was going to lose all her abilities and die if she didn't receive this. And so once she started receiving this within just a few months, her 30 seizures a day went down to nothing; she had occasional small tiny seizures that were barely visible but her quality of life was incredibly you know improved, not to mention our family's because she was no longer thrashing and smashing her arms and legs up against walls and tables. She had been slumped and could no longer sit up. She could no longer hold her body up and take steps with my support from behind and after Milasen she started being able to do that even walk up the stairs with alternating feet with me supporting her from behind. She also had received a G-tube and was receiving all of her nutrition through the G-tube and after Milasen she started eating by mouth, it wasn't perfect, but she was eating pureed foods, and being able to swallow better and probably most importantly she was able to smile and laugh at the funny parts in the books and the stories that I had been reading and singing to her and that she had kind of really not been responding to as much before Milasen and some of that came back. So, a year into this everyone was quite shocked that Mila had done so incredibly well in this first year despite how progressed she was, progressed her condition was. Unfortunately in the second year it was during COVID and it was unclear whether or not Mila's disease had kind of stopped or whether it was slowly progressing and in the third year Mila started having problems associated with her rare condition and I was faced as a mother with the most horrible decisions anyone should ever, never, never, never have to face to decide what Mila would want if she were able to talk and tell me whether or not this was a life that she felt like she would want to live. And after three years on Milasen, which was three years ago almost this week, Mila died and in many ways my life as I knew it was kind of over. I'm a very positive happy person and I have a son and I continue getting up every day and pushing through the day but I'm not sure how any parent makes it through days, weeks, months and their whole life without their child physically there with them. Ana Lisa: We can really hear the perseverance that you had to get a diagnosis through whole genome sequencing eventually for Mila. Can you tell us a little bit more about that process and what that diagnosis, what did it mean for Mila and for your family? Julia: When Mila was first diagnosed with Batten Disease, one of the missing mutations could not be found by any lab. I did research and found out that whole genome sequencing which at the time was very, very hard to find a lab that would do it or anyone that would do it in the United States, I did learn that that was really what was needed in order to try to really get down to find the underlying genetic cause of Mila's disease and give her a full diagnosis. So once we managed to have Dr Yu's lab at Boston Children's Hospital carry out the whole genome sequence, obviously we were able to then find exactly where the broken, underlying broken kind of genetic mutation was and why that was important was for two reasons: 1) was so that we could actually have a diagnosis and even though it was the worst diagnosis we could have ever asked for, at least there was an answer and for so many years I didn't have an answer and there is nothing worse than seeing your child, you know, having all of these different symptoms and problems and having you know tens, if not hundreds, of different doctors and therapists tell you that they don't know and maybe you're just a little bit over-worked and over-worried about things, and having no answer and no idea what's wrong is like living in this limbo that's just terrible. And so whole genome sequencing allowed for us to have a full diagnosis for Mila, and it also allowed us to use that data since it was truly the precise place where, you know, we could find the precise plan where her gene was broken. It allowed the researchers to then also think about what could be done about it as well, which is the second thing a parent thinks about after they have the kind of relief in some ways, which is a strange word to use but it's true, of knowing what is wrong and then thinking, “What could I do about it now?” And so for me I would say that's how, Ana Lisa, that's how I reacted to that, is there was enormous relief initially, which is just the weirdest word ever to use for that but at least I felt like I wasn't crazy and that there was an actual reason and that it allowed us, allowed me and others to think what kind of action can we take now. Rich: One of the things that often strikes me, I'm a clinical geneticist by background, just like Ana Lisa, is how often particularly several years ago when we were in a different situation, it depended on families and parents pushing and pushing and pushing and asking, that's something I think in the UK we're really lucky that there have been changes in terms of availability of testing. Julia, as you know, we were set up ten years ago initially to run a project, a research project in partnership with the NHS called ‘The 100,000 Genome Project' asking the question about whether whole genome sequencing could be used in a diagnostic setting. Whole genome sequencing had just emerged as a thing that could even be conceived of as affordable in a healthcare system back then, and we worked with the NHS and tens of thousands of families with rare conditions and people with cancer to ask that question and again, we're really proud of what that work and our partnership with the NHS has led to, which is now in the UK. There is the availability nationally of whole genome sequencing to test in certain settings including in rare conditions that are hard to solve in this sort of way and it's one of the things which has really changed the way we can go about this, but we also know that there's still, it's still hard often to identify who should be seen by a specialist who might do a test and so on. But it has really changed things and I think it's hearing from families like yours about how challenging it is and thinking about how we turn, looking across all of the story that you told us of everything you went through, how we can make that be something where we can make it be more systematically available and work for many more people, and I know your phrase from Mila to millions really strikes a chord with me, and I know with the NHS mind-set here in the UK where it's about equity of access and I think that mind-set that you bring is so important. Julia: Yes, Rich, I think it's a really good point you know, because a lot of parents like myself, we're talking about probably millions around the world and tens of thousands just in the UK alone, spend so much time going from one physician to another and to a therapist and it takes an enormous amount of energy and time in a family that's already dealing with pain and confusion and not understanding what's going on, not to mention usually that child, in my case, Mila, is having problems that it's not easy to leave the house and get in the car and go to all these appointments. And the more we can push towards whole genome sequencing as one of the first places to go, if not the first place to go, the more it's going to cut that sort of diagnostic odyssey down to the very bare minimal. And so of course a dream would be is that any child that has, I like to think of it as soon as you kind of have more than one symptom that shouldn't normally go together, that sort of has a little red flag that goes off and in most parts of the world right now no physician wants to scare a parent like me, it's happened a number of times to me where a physician has said, “Well, you know, there is this rare condition but I'm not going to bring that up because it's so rare that the likelihood that your daughter has that, I wouldn't want to scare you.” But the more we can move towards whole genome sequencing right away to help with that answer that could cut months and very often years from that odyssey, and that is where we need to be, we can't have the tapping on the knee and stacking up blocks and running down the hall for months and years just to figure out what's going on. Ana Lisa: And I think Rich also there said a power of having a national healthcare service where patients who are having whole genome sequencing can also decide whether they wish to consent to be part of research and combining that with a national genomic research library and then the ability to work so closely with the NHS and go back to patients if there is a new diagnosis that could benefit them is really powerful I think, and that's definitely one thing that we've also learnt from these big whole genome sequencing efforts is that our knowledge is continuing to develop and some people will get a diagnosis from that immediately and we've got amazing colleagues working on diagnostic discovery looking at whole cohorts of patients now who are having whole genome sequencing and that's also been really informative and allowed a lot of new diagnoses identified also through research and through these efforts to be found. Julia: Absolutely and I think that the UK is incredibly well suited to have such widespread sort of country-wide whole genome sequencing project like what Genomics England has done because you have one system where all of the clinical and genetic data can all come in and kind of be analysed both for like you said diagnostics but also it could be, if families and patients are interested, right, in contributing to the research which then comes full circle and helps the entire system benefit from better treatments you know and better understanding of diseases. Rich: And that point of sort of thinking about how to move things forward, so the NHS has a service based in Exeter which is addressing the question where children are on intensive care, where often intervention is needed really rapidly to make a difference, so that's one of the examples where sort of thinking about making sure that service is available early and rapidly is being set up and that's been really successful and identifying a cause where that really changes the care of that child on intensive care. The other area where we're working really closely with the NHS at the moment, as you know, Julia, and in fact I think this was probably one of the reasons we first came to talk to you was thinking about our newborn genomes programme where if you like, the big question there is saying we know that there are a few hundred conditions that are within that longer list of rare conditions where there is a treatment available routinely if the diagnosis is made, and saying could we use whole genome sequencing alongside existing newborn heel prick testing which in the UK currently looks for nine, shortly to be ten, conditions. So we're just about to launch that programme and that will sequence the genomes of 100,000 babies born at maternity hospitals, not selected for children where there's something, a concern, raised, but any baby at that hospital would be eligible for the family to choose to join that research programme and really to ask that question about whether this is something that we should offer to all babies developing the scientific evidence around it, learning about how you might implement it in practice, and also having conversations about how one might do that, what public attitudes are to it and so forth, developing evidence that can move us forward in that area too. And back to Ana Lisa's point about improving knowledge, we know that today there are a certain number of conditions that one might think are comparable to those nine that are currently looked for in the UK on the heel prick that we could use genetics as a way in. We also know that through the sort of innovation and the new knowledge that you mentioned that was relevant to Mila, that list might grow quite considerably in the coming years, so it's thinking about how we set ourselves up to make sure that we're able to take advantage of that to its full. Julia: Yeah, and I think it's a great, I'm glad you brought this up Rich because the UK really is leading the world in this, there is no-one else that is doing whole genome sequencing at birth, and ultimately, that's where we need to be. You know it's not going to happen overnight and like you said, the purpose of this is really to learn a lot about how and if to roll this out maybe in a larger scale way across the UK. But ultimately, you know, as Mila's mom, I think all the time about you know how incredible what I saw at a very progressed state for Mila with this treatment and the only way to actually really truly help Mila and other Milas is to get to these children early enough so that they're diagnosed before they have symptoms and they're treated before they have symptoms. And the way to move towards that is to at least have efforts like the project, you know, the newborn screening project so that we can get to children, find them before they have symptoms, treat them before that and from what I saw from Mila I feel pretty strongly that if Mila had received Milasen at birth she might never know the effects of Batten Disease, and we as a family might never know what it's like living with a rare condition, and this is a step in that direction to help. Effie Parks: Hi there, I'm Effie Parks, mom to Ford, who lives with a rare neurodevelopmental disorder called CTNNB1 and the host of the Once Upon a Gene podcast. Our show connects families facing rare diseases, offering stories from parents, insights from experts and discussions on everything from navigating grief to exploring genetic advances. It's a space for understanding, connection and empowerment. For support and inspiration on your rare disease journey, subscribe to the Once Upon a Gene podcast on your favourite podcast app and let's navigate this path together. Ana Lisa: Julia, I'm interested to hear what you think the development of individualised medicines like the N1 treatment Mila had what that means for the sort of collaboration that's required across the genomics ecosystem to achieve that. Julia: Yeah, that's a really good question. It's been seven years that I've been thinking about this kind of individualised medicine concept, you know, as Mila kind of became the pioneer in this field and I'm not a scientist, I'm not a physician, but I've learned a lot because I've been fortunate enough to be part of thousands and thousands of conversations, including with all of you and others, Genomics England, and around the world and I think what I learned and what I've learned so far is that when you have a genetic condition most genetic conditions are individually rare and unfortunately that doesn't make them very suited to have anyone go after a treatment for them because really the only way to connect a patient, a child like Mila, to a science or technology is if they're lucky enough, and I hate to use the word ‘lucky' but they're lucky enough to be part of a large kind of cohort of people, and that allows them to be, you know, commercially viable, so a company will be maybe develop if they're lucky, a treatment for that, for those people. The only other option is this sort of like Herculean effort of which myself and Dr Yu and others went through, we had to raise millions of dollars and get hundreds of people to get on board and develop a novel medicine for one person – now how scalable is that? How many times can we do that, right? And so the only people that really have access to medicines today with genetic conditions are those that are fortunate to be part of one of these two groups, but what about everyone else which is 95% of the people? And so I think what the field is learning is that we kind of have the patients and we're finding them, especially thanks to Genomics England and others, we're starting to find them more rapidly earlier, more of them, and we have these technologies to be able to not only find them but to also treat them but we just do not have the infrastructure and the processes to connect them, we have clinical trials and we have these sort of named patient route but we don't have anything else. And so I think the genomics community, especially in the UK because it's so well suited with all the efforts that we've just brought up, is really well suited to kind of try to work together to allow for access kind of no matter how many people could benefit, it's not only one, it could be six or 20, or 200 or 500. Right now there is no access for them. So I think that the UK is really well suited, starting with whole genome sequencing, that's where it begins, it begins by identifying patients early enough and getting the data that's needed in order to diagnose them and also to help with the treatment you know, and so this is how I think the UK is really leading the world right now, including in the recent announcement of the rare therapies launch pad, which Genomics England is part of, I am part of, others are part of, Oxford Harrington Rare Disease Centre, the MHRA, others are all part of really trying to be dedicated to building the infrastructure and resources and processes that are needed to connect the patients to these technologies that exist today. Rich: I've been really inspired by the conversations and the drive that you, Julia, personally have given to those conversations. And I think what's really interesting and I think it's relevant more broadly than just in rare therapies particularly, but I think that challenge of recognising the need for the system to change to be able to respond to evidence and make the response proportionate to the expectations of various people, the patients or the families who are receiving it, the system as a whole, these sorts of therapies and rare conditions as well, are just not the shape that works well with existing paradigms, but I think it's relevant you know, in other settings as well. I'm really interested in some of the conversations that I've had with you before about balancing risk and understanding how to get that right and the fact that that really needs an open discussion in public to also understand the journey and the situation that families find themselves in. I wonder if you could tell us a bit about your perspective on getting that risk balance right? Julia: Thanks for bringing that up, Rich. I think it's really, really important because to me the way we think of risk and benefit and the risk tolerance maybe is a better way to put it is the foundation of the house that we're building. So, you know, the regulatory process and everything behind that are built on top of how we think about risk. And one of the things that I regularly think about is children that have end stage cancer, and that we as a society have accepted an enormous amount of risk for a child at end-stage cancer that has no other options that's going to die no matter what, probably very rapidly and that if they don't respond to kind of some of the main line treatments then to turn to an experimental cancer treatment which carries a very high risk is considered very acceptable by our society and that everyone, the clinicians, the families, the regulators, everyone is willing to take that risk for that child because they're going to die otherwise. And they're willing to spend money and they're willing to take the risk and often perhaps to buy that child maybe three or six months of life. So then if you look at Mila and if I tell you that instead of having a rare condition that she has an end-stage genetic disease, and I use the words from cancer, from oncology, is now suddenly the discussion changes a little bit, so Mila's going to die no matter what, no child has ever lived with her form of Batten Disease and she's going to lose all of her ability, so we know the risk of not treating Mila. The risk of treating Mila in this case was an antisense oligonucleotide, which is a modality that's been around for 30+ years, tested in animals and more frequently in numerous humans across different sort of trials. And the labs that worked on Mila's medicine felt that it was safe enough and hopefully efficacious enough. And at that point why is the hurdle so exponentially higher than what it would be for a child with end-stage cancer? The way that we are thinking about these children with end-stage genetic disease and end-stage cancer, is drastically different, so we need to first, to your point Rich, we need to start realising we've already set that precedent, we don't need to be having this discussion again. We know the risk we're willing to take for a dying child when there's no other therapeutic, no other option and they're going to die no matter what. So the risk of treating Mila, versus the risk of not treating Mila is black and white and we need to do our best and then we need to not only treat Mila but we need to learn from the treatment of Mila. We need to collect those learnings, they must be iterative learnings so that the next child that's treated with an individualised different ASO or different medicine that they don't happen in silos, but that all of this knowledge comes together so that the second and the third and the fourth and the tenth and the twentieth, the process gets better and faster and eventually cheaper so that it's accessible. Rich: Yes, and that's very much back to Ana Lisa's point on the link and for diagnostics too on continuing to learn and creating a system that recognises that that's crucial to offering the best care today but also in the future and being able to make proactive decisions more confidently if you're a policymaker, knowing that you'll continue to learn, you don't have to pretend you know everything today. Julia: It's very meaningful for parents. So when parents, children, are diagnosed whether it's a fatal or life-longing debilitating or difficult disease, if you know that what's being learned from your child both from just the genomics to the potential treatments that that's helping the next child, that helps parents like me be able to continue living. And so you know, research is this kind of generic word, I wish there were a better word for it. Really what it is, is it's learnings and it's what can be learned from my child that can help the next child? Ana Lisa: And then that learning requires a lot of collaboration, which is the super important part I think of your story. Julia: Yes, it does, it requires a lot of people starting with those diagnosing the children with whole genome sequencing all the way through just to the clinicians who are in the NHS, not to mention the researchers who are then looking at the data and bettering their understanding. Ana Lisa: I think there are also, maybe one can extend some of those parallels as well, in that I think currently we sometimes think of an individualised therapy of NF1 as being something that takes a lot of time and benefits an individual, and actually if we can really collaborate we can really set up processes that work across the ecosystem and keep learning, then I'd love to dream that actually this could help many, many different patients, with many, many different types of rare conditions because actually we've learnt how to target a little bit more at source, perhaps a particular type of genetic variant, and so a bit like cancer, we're not thinking about breast cancer, we're thinking about what sub-type, what genetic causes there are and targeting those, and if we can apply that one day more broadly across rare conditions then it might be that actually once you've learnt a certain amount, that you could scale up and treat many, many different conditions, not dependent on their frequency in the population. Julia: Yeah, that's a great dream, I share that dream. Rich, what is your, you've been in this for many years, what's your dream for the next five, ten years? Rich: I guess I have, I think there's two aspects to it. I think there's two, I think there's a lot of distance left to run for us improving on the diagnostics and I think thinking back to your conceptualisation of it Julia, of sort of thinking about how we can bring that earlier, whether that is that for example we're able to sort of more proactively flag when children have you know, more than one visit to a particular type of doctor or something that makes that happen much earlier in the process. So the tooling that we now know works whether it's whole genome sequencing or something more targeted can be used earlier in the process, or whether for example in our newborn genomes programme we get that evidence that we can look for a broader range of conditions in a screening context right at the beginning of life. And I think in five to ten years we should be in a substantially different place, we'll know whether or not we think whole genome sequencing should be there but offered for every baby at birth, and we can be much more proactive also when symptoms arise. I would also hope that on the side of therapies and intervention, we're in a substantially different position and I think, I've been amazed the last five years how my level of hope has increased. I believe we should now be in a position in five to ten years where those with a therapy that is potentially there to benefit them, should at least be able to be aware of it and there will be a clear pathway by which either that is available if it's proven, or there's a pathway that we all understand about how that can be trialled. And I think we're at the beginning of that journey and I now feel it's a responsibility of ours to work through how we can bring the right pieces into place, we can't prejudge the science, but we can set up the system that makes us be able to respond to it. Julia: Yeah, I remember Rich when you and I were speaking a number of months ago and maybe you could share the story because you talked about your hope kind of changing over time as a clinician I thought that was really powerful to me. Rich: Yeah, I remember it's probably now maybe 15 years ago being asked by a family about what my advice would be to them on the likelihood of there being a treatment for their child's particular condition being available and in fact they asked me to do it in a way that I sort of provided a formal written report to them that I spent a lot of time thinking about and agonising over and was very honestly you know saying it was highly unlikely that something would become available. If I had to write that same report today it would be very different. Julia: That's so promising to hear that. I don't know, Ana Lisa, have you had any experiences like that in the past that you feel differently now of how you would approach a family like mine? Ana Lisa: I think it's a real balance between having that hope ourselves, sharing that hope with other people and not giving false hope and it's such a balance when right now more than 95% of rare diseases don't have a treatment and I think that's such a difficult position to be in right now. And everything we've been talking about gives me massive hope for the future and a lot of what we're pouring our energy and efforts into is both the diagnostics so that we're not trying to make a puzzle with missing pieces in the dark and that's mission-critical, and then the real hope that actually this will drive therapies, which is what we really want for everybody who needs a therapy to have a therapy that's effective, whether they've got a common condition, a rare condition and that's our driving ideal. So I think I'm full of hope and optimism and I hope that it will accelerate, that's what I really hope, the momentum will build and we'll get to a certain level of knowledge, we're learning the processes, we're learning the evidence, we're learning the collaborative models that are needed to really suddenly explode our ability to treat rare conditions. Julia: Yeah, you know when Mila was, I guess when I look at newborn screening in the United States and Batten CLN7, which is Mila's kind of sub-type of her condition is not on newborn screening tests because there is no treatment for it, but the whole genome sequencing that was done for Mila was the data that we got from that was what was needed to create a treatment for her and so it's an unusual case where she was sequenced and a child and a baby, a newborn in the UK could be sequenced and not only told that they have a disease, so they have time to kind of understand the disease more but also potentially kind of prepare for a treatment that might be in the pipeline, but that data is also going to help scientists and researchers create new treatments that may not be available when that child is born but that's the data that's needed to create the treatment. Right now you guys are you're really at the forefront of solving both halves of the what I consider like a rare condition, you know, global health crisis with tens and hundreds of millions of people that have you know families like mine, like my story sounds unique, it sounds impossible but there are tens of millions of other people like me, like my story sounds unique, it sounds impossible but there is tens of millions of other people like me and so to have the UK kind of leading this effort to solve both halves of the problem, the diagnostic half, you know, what disease does a child have and find it in time and also kind of the treatments, here's where we're headed, and if we don't solve both of those problems then there is no such as access, you know to a better life, so I'm really grateful for the fact that you've set a precedent for other countries because now finally there are other countries that are looking towards you and kind of really trying to do the same thing that you're doing. Rich: Yeah, well I think we feel we're uniquely placed; the NHS in the UK and for Genomics England our partnership with the NHS, together with a number of other factors and I think the recognition from government as well as the NHS over a long period that the importance and the power of genomics and the importance of for example, making changes to regulation to get it right mean that it's something that I think we feel really privileged to be in the position to even be able to ask these big questions. Julia: yeah, I think the UK is really uniquely suited to have hung their hat on genomics so that the topics you're taking on are very central, they're not kind of on the sideline, they seem whenever I'm in the UK they say that what Genomics England is doing is at the forefront and in the middle of all the discussions with academics and companies and regulators and government. What do both of you think are the, what are the biggest kind of hurdles we have coming a few years in the newborn programme or you know, any of your other initiatives? Rich: I guess all of these are big questions and I think we need, it's back to that sort of point from Ana Lisa sort of balancing the hope and expectation, I think we're uniquely placed to develop the evidence really clearly and one of the things that we again think is so important is having this conversation in the public about it and developing a shared view, almost you know, it drives policy but it's also something which I think the whole of society needs to sort of think about how we address and what we want to do collectively. I wouldn't place it as a barrier but I would highlight it as a strength that we've had and I think we're hopeful that we'll continue is that long-term commitment in terms of government and the NHS and I think that's really powerful in this space to maintain the UK's position as being able to ask these questions and to show that leadership. Ana Lisa: And to bring together, we need to work really closely across the ecosystem. So in my mind one of the challenges is if one part is missing then that person is not going to get the treatment and how we keep joining up these really important dots across the whole ecosystem to make sure that most people will one day be able to get a treatment. Julia: And all those dots honestly, those dots can never even start unless you have a diagnosis and it's in time. And so there are so many people around the world working on each of those dots that connect a child or a patient to a treatment, but if you can't even be diagnosed or if you're diagnosed too late, which is what the reality is in the world of rare conditions right, then you know, then it's a little bit futile to race to a treatment or even think if that's possible. So I think the very, very first thing is: can we find children and patients, like can we find children like Mila in time? And I love hearing the word ‘hope' that's the word that keeps me going and doing what I'm doing because if there isn't any hope it's pretty hard to keep fighting, so I'm really glad, thank you both for having hope. Okay, we'll wrap up here. Thank you to Ana Lisa and to Rich for joining me in this conversation today as we shed some light on the challenges you know that those with rare conditions are facing. We touched on the work being carried out across the Genomics ecosystem in the UK to support those living with rare conditions. If you'd like to hear more of this, please subscribe to the G Word on your favourite podcast app. And thank you so much for listening. I've been your host, Julia Vitarello. This podcast was edited by Mark Kendrick at Ventoux Digital, and produced by Naimah Callachand.  

Today's Episode Dr. Raj talks with Dr. Rudy Tanzi about his work in Alzheimer's Disease research, his acronym SHIELD for evading its progression, and how his background as a musician has intersected with this work.  Today's Guest Dr. Tanzi is the Vice-Chair of Neurology, Director of the Genetics and Aging Research Unit, Co-Director of the Henry and Allison McCance Center for Brain Health, and Co-Director of the MassGeneral Institute for Neurodegenerative Disease at Massachusetts General Hospital. He also serves as the Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard Medical School. Dr. Tanzi received his BS (microbiology) and BA (history) at the University of Rochester in 1980 and his PhD (neurobiology) at Harvard Medical School in 1990. Dr. Tanzi co-discovered the first Alzheimer's disease (AD) gene, the amyloid precursor protein (APP) gene, and the two other early-onset familial AD genes, presenilin 1 and presenilin 2. As leader of the Cure Alzheimer's Fund Alzheimer's Genome Project, Dr. Tanzi identified several other AD genes, including CD33, the first AD gene shown to regulate neuroinflammation. He also discovered the Wilson's disease gene and other neurological disease genes. Dr. Tanzi's team was the first to use human stem cells to create three-dimensional neural-glial; cell culture organoids of AD, dubbed “Alzheimer's-in-a-Dish”. This model was the first to recapitulate all three key AD pathological hallmarks in vitro, and first to definitively show that amyloid plaques directly cause neurofibrillary tangles - and also made drug screening for AD faster and more cost-effective. Using this system, Dr. Tanzi has developed several novel therapies for AD including gamma secretase modulators targeting amyloid pathology and AMX0035, which was already successful in a clinical trial of ALS and now seeking FDA approval. Dr. Tanzi also discovered that beta-amyloid plays a functional role in the brain as an anti-microbial peptide, supporting a role for infection in AD pathology. Dr. Tanzi serves as Chair of the Cure Alzheimer's Fund Research Leadership Group and numerous advisory and editorial boards. He has been named to TIME magazine's list of TIME100 Most Influential People in the World. Dr. Tanzi is a New York Times bestselling author who has co-authored the books Decoding Darkness, and the bestsellers Super Brain, Super Genes, and The Healing Self with Dr. Deepak Chopra. Dr. Tanzi has hosted several shows on public television, regularly appears on television news programs, and has testified to Congress on both Alzheimer's disease and brain health. About Dr. Raj Dr Raj is a quadruple board certified physician and associate professor at the University of Southern California. He was a co-host on the TNT series Chasing the Cure with Ann Curry, a regular on the TV Show The Doctors for the past 7 seasons and has a weekly medical segment on ABC news Los Angeles. Want more Dr. Raj? Check out the Beyond the Pearls lecture series! The Ultimate High Yield Bundle: The complete review of high-yield clinical medicine topics necessary for graduate medical education board exams including NBME, USMLE Steps 1/2/3, ITE and ABIM Boards. You can also listen to the Beyond the Pearls podcast. Check out our other shows: Physiology by Physeo Step 1 Success Stories The InsideTheBoards Study Smarter Podcast The InsideTheBoards Podcast Produced by Ars Longa Media To learn more about us and this podcast, visit arslonga.media. You can leave feedback or suggestions at arslonga.media/contact or by emailing info@arslonga.media. Produced by: Christopher Breitigan and Erin McCue. Executive Producer: Patrick C. Beeman, MD Legal Stuff The information presented in this podcast is intended for educational purposes only and should not be construed as professional or medical advice. Learn more about your ad choices. Visit megaphone.fm/adchoices

Why Department of Energy Funded Genome Project Linked to Eugenics Inst.? We cover Eugenics Institutes projects, one is called NeuroAI, which stands for the integration of neuroscience and artificial intelligence. NeuroAI is a multidisciplinary field that aims to understand how the brain works and how to improve AI systems by incorporating biological principles and mechanisms – Brain Tissue in Ai Computers. How does this fit the fake Ai God and Fake 6G Holy Ghose. Is the DOE trying to tap into human energy with the MOTB system? The Average human body, at rest, can produce around 100 watts of power on average. This is enough electricity to power up a light bulb. Some humans have the ability to output over 2,000 watts of power, for instance if sprinting. The 3 stated goals of the DOE genome project are as follows and notice how the last one is wicked: 1. Determine the molecular mechanisms, regulatory elements, and integrated networks needed to understand genome-scale functional properties of microbes, plants, and interactive biological communities. 2. Develop -omics experimental capabilities and enabling technologies needed to achieve dynamic, systems-level understanding of organism and/or community function. 3. Develop the knowledgebase, computational infrastructure, and modeling capabilities to advance predictive understanding and manipulation of biological systems. We cover MIT saying Radio Frequencies can control objects in you and how companies can use humans as a power source for 6 G. They will use humans as antennas, by harvesting the waste energy from Visible Light Communication (VLC). VLC is a wireless version of fiberoptics, which uses light from LEDs to transmit information. - Think Graphene in the poke. Is this the DOE's goal? Nokia CEO Pekka Lundmark at the World Economic Forum in Davos said: “By then (2030), definitely the smartphone as we know it today will not anymore be the most common interface, many of these things will be built directly into our bodies” Difference of Internet of Bodies and WBAN IoB is a broad term covering networks of smart objects linked to the internet that interact with the human body. WBANs are a subset of IoB, focusing on low-power wireless communication within, on, and around the body. IoB devices use various wireless technologies like RF, Bluetooth, Wi-Fi, or cellular networks for communication. WBANs mainly employ Body Channel Communication (BCC), using harmless electrical signals through the human body for secure and efficient communication. IoB devices serve multiple functions like tracking, diagnosing, treating, enhancing, or augmenting the human body. WBAN devices primarily monitor, sense, or stimulate physiological signals like heart rate, blood pressure, temperature, or brain activity. We end with scripture and connect some Dots.

For the qualities that top-performing CEOs have in common, research shows some surprising results. It turns out that charisma, confidence, and pedigree all have little bearing on CEO success. Elena Botelho, partner at leadership advisory firm ghSMART and coleader of its CEO Genome Project, studied high performers in the corner office. The analysis found that they demonstrated four business behaviors: quick decision making, engaging for impact, adapting proactively, and delivering reliably. Botelho cowrote the HBR article “What Sets Successful CEOs Apart.”

In this first part of my Book Review I look at 'The Genie in your Genes' by Dawson Church, PhD. I look at how ground-breaking this book was (2007, rev 2009)  and how it was so far ahead of its time in teaching us about how your environment (the thoughts you think, the emotions you feel - or don't allow yourself to feel) all get buried in your body changing your DNA expression and therefore your health.Buried painful feelings promote cell breakdown whereas positive beliefs and feelings promote cell repair and therefore wellness.If you prefer to watch a video please find that herehttps://youtu.be/ANIrWLjdLTMSee also my keynote presentation for the Chrysalis Effect Conference - From the Biological to the Spiritual - a Journey of Recovery is available on Youtube herehttps://youtu.be/cCF7RPfXvd80:00 Intro - My talk for the Chrysalis Effect prompted me to review my influences03:10 Changing the pattern of energy in the body05:14 The Gene Conundrum and the Genome Project shock!07:40 Feelings and beliefs are drivers of gene expression08:53 Trauma embeds in the body creating a vibration of negative experience and symptoms09:49 Fascinating Fascia - a liquid semi-conduction crystal link to your microtubules (scaffolding)11:14 Quantum biology and the piezoelectric body interacts with electromagnetic fields in the body13:20 HRV and training your heartfield, consciousness and changing the nature of your reality15:48 Feeling unified - religion and science to provide meaningful belonging16:50 A different consciousness of hope and collaboration17:20 Power of intention and vulnerability**Watch other videos**TRAUMA AND THE SYMPTOM IMPERATIVE https://youtu.be/OGQKIFsTeuESHAME AND ITS ORIGINS https://youtu.be/4j9AJq5_z7IEMOTIONAL RESILIENCE  https://youtu.be/E5TYi9dEBEUWHY ANXIETY IS NOT A MIND ISSUE https://youtu.be/Ty-J2pu37tAHOW CHILDHOOD EMOTIONS STILL AFFECT YOU: https://youtu.be/8LzR8yhR8u8 *If you're suffering from Chronic pain, fatigue or anxiety, I CAN HELP*CONTACT ME: https://www.alchemytherapies.co.uk/Alchemy Therapies & Emotional MasterclassOTHER USEFUL RESOURCESGroup Healing Program: http://myemotionalaudit.comAuthor/Book site: https//patriciaworby.comPodcast: https://www.alchemytherapies.co.uk/po...121 and group therapy and training for stress related conditions like anxiety, fatigue and pain: https://alchemytherapies.co.ukSee in particular: Thrive! - an introductory mindbody connection program and The Emotional Audit for more intensive training.COMING SOON:Intensive Training Program: https://emotionalmasterclass.com

DCM Insights founding partners, Matt Dixon and Rory Channer, share the findings of their latest research on what the top pro services partners do differently to drive business development success. The post The Rainmaker Genome Project with Matt Dixon and Rory Channer appeared first on Rattle and Pedal.

DCM Insights founding partners, Matt Dixon and Rory Channer, share the findings of their latest research on what the top pro services partners do differently to drive business development success. The post The Rainmaker Genome Project with Matt Dixon and Rory Channer appeared first on Rattle and Pedal.

Join us for EP99 of The Genetics Podcast as Patrick dives into the extraordinary career and work of Dr. Harold E Varmus, a Nobel laureate scientist, former director of the National Institutes of Health, president of Memorial Sloan Kettering Cancer Centre, and director of the National Cancer Institute. Join Patrick and Harold as they navigate the complex landscape of cancer, from advancements that have revolutionized the field to diversity in cancer research and the Polyethnic-1000 Genome Project. This compelling episode is punctuated by Harold's personal reflections, and invaluable learnings from his career. 1:27 Why a Beowulf quote made its way into Harold's Nobel Prize acceptance speech 2:28 How it feels to hear you have won a Nobel Prize 4:04 How did fulfilling a national responsibility during the Vietnam War lead to a Nobel Prize 7:54 Areas of cancer research that are moving forward, and areas that are more stubborn 9:44 The formidable hurdle of metastasis 11:00 The educational power of COVID 12:33 Cancer and evolution: why is cancer so difficult? 14:50 Introducing the Polyethnic-1000 Genome Project 19:35 Working with WHO to ensure genomic technologies are accessible to all 23:03 What are the biggest blockers to the widespread adoption of genomics? 26:00 Context switching: From ‘deep' science to stepping into the role of director 28:50 Learnings on how science is funded and coordinated 33:05 Discussing the allocation of funding: small grants Vs. large, coordinated efforts 36:16 Co-founding PLoS and PubMed Central 39:49 Accelerating the shift towards more open science 44:44 Just how close are we to curing cancer? 48:00 Studying cancer rates in mammalian species

Join us for EP99 of The Genetics Podcast as Patrick dives into the extraordinary career and work of Dr. Harold E Varmus, a Nobel laureate scientist, former director of the National Institutes of Health, president of Memorial Sloan Kettering Cancer Centre, and director of the National Cancer Institute. Join Patrick and Harold as they navigate the complex landscape of cancer, from advancements that have revolutionized the field to diversity in cancer research and the Polyethnic-1000 Genome Project. This compelling episode is punctuated by Harold's personal reflections, and invaluable learnings from his career. 1:27 Why a Beowulf quote made its way into Harold's Nobel Prize acceptance speech 2:28 How it feels to hear you have won a Nobel Prize 4:04 How did fulfilling a national responsibility during the Vietnam War lead to a Nobel Prize 7:54 Areas of cancer research that are moving forward, and areas that are more stubborn 9:44 The formidable hurdle of metastasis 11:00 The educational power of COVID 12:33 Cancer and evolution: why is cancer so difficult? 14:50 Introducing the Polyethnic-1000 Genome Project 19:35 Working with WHO to ensure genomic technologies are accessible to all 23:03 What are the biggest blockers to the widespread adoption of genomics? 26:00 Context switching: From ‘deep' science to stepping into the role of director 28:50 Learnings on how science is funded and coordinated 33:05 Discussing the allocation of funding: small grants Vs. large, coordinated efforts 36:16 Co-founding PLoS and PubMed Central 39:49 Accelerating the shift towards more open science 44:44 Just how close are we to curing cancer? 48:00 Studying cancer rates in mammalian species

Popular stereotypes of successful CEOs as charismatic white men with Ivy League degrees who never falter under pressure are often misleading.“[T]he CEOs I get to know up close and personal really look nothing like this image of perfection. And so we decided to dig into this with the data,” says Elena Botelho, who co-leads the CEO Genome Project and advises top leaders. Botelho tells IdeaCast host Sarah Green Carmichael that actual success in the C-suite has more to do with being decisive, staying adaptable, and delivering reliable results.Key topics include: leadership development, leadership transitions, decisiveness, adaptability, and results.HBR On Leadership curates the best case studies and conversations with the world's top business and management experts, to help you unlock the best in those around you. New episodes every week.Listen to the original HBR IdeaCast episode: 4 Behaviors of Top-Performing CEOs (May 2017)Find more episodes of HBR IdeaCast: https://podcasts.apple.com/us/podcast/hbr-ideacast/id152022135?mt=2Discover 100 years of Harvard Business Review articles, case studies, podcasts, and more: https://hbr.org/]]>

For today's Women Leading Validation spotlight conversation, Dori Gonzalez-Acevedo CEO of ProcellaRX interviews Wendy Haines, PhD, DABT, ASQ CQA, Director of Toxicology & Technical Services at PharmEng TechnologyWendy has impacted human health laws at Environmental Protection Agency (EPA) starting in 1997, worked on the Genome Project between EPA and National Institute of Health (NIH), and later conducted her PhD at EPA. Wendy was a study director and functioned as single point of contact for all aspects of a study for both commercial clients and the government. She then moved from a contract laboratory setting to a consultant company providing toxicology, project management, and validation services to pharmaceutical and biotechnology manufacturers. Dr. Haines has conducted over 350 product toxicology safety risk assessments for contract manufacturers and owner companies and provides guidance on product testing, worker safety programs, cleaning validation, and extractable and leachable projects.Wendy's unique perspective, understanding of professional societies – how you can participate, volunteer and network with others to expand your knowledge.  *Disclaimer: Podcast guest participated in the podcast as an individual subject matter expert and contributor. The views and opinions they share are not necessarily shared by their employer. Nor should any reference to specific products or services be interpreted as commercial endorsements by their current employer. This is a joint Podcast production of ProcellaRX and KENX

Not only are dogs man's best friends, they also have many common traits when it comes to the subject of cancer. On today's podcast, Dr. Elaine Ostrander will talk about the many similarities that the canine and human specie have when it comes to cancer, including similar forms of cancer, similar treatment protocols that they experience, and similar clinical trails that can work for both species.  Dr. Ostrander started the Canine Genome Project and has worked at the National Institute of Health for the past 18 years. 

Another brilliant session from the last genomics England Research Summit, where Chris Wigley spoke with Professor Dame Sue Hill and Vivienne Parry, about the state of genomics research and the pathway to clinical implementation. What does it take to scale an idea like whole genome sequencing diagnostics across an entire health service?    You can find our transcript here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/Genomics-England-Research-Summit-2.docx    "the NHS is both the producer and the consumer of innovation"   On todays episode of The G Word, Chris Wigley is joined by Vivienne Parry, our Head of Public Engagement and Professor Dame Sue Hill at our 2022 Genomics England Research Summit. They discuss what genomic testing means for both clinicians and patients, how we measure equity of access and patient stories from the 100,000 Genome Project. 

In 2012, the 100,000 Genomes Project was announced, the same year we started this podcast!Back in 2015 we did an episode about the 100,000 Genomes Project so we're excited to revisit this massive project today with Dr. Julian Barwell, who is a clinical geneticist and has countless titles but today's most relevant one is the operational clinical lead of the 100,000 Genome project.After finishing his Clinical Genetics training (2001-2007) at Guy's, St George's and the Royal Marsden from the University of London; Dr. Barwell started as a consultant in Clinical Genetics in Leicester. He runs specialist clinics in inherited cancer susceptibility; non-alcoholic fatty liver disease and susceptibility to hepatitis, cirrhosis and hepatocellular carcinoma; Von Hipped Linda syndrome and Neurofibromatosis type 2. He has over 60 publications and helped coin the internationally known phrase, the 'Angelina Jolie effect' on referrals to inherited breast cancer clinics. He also developed the first YouTube channel for Clinical Genetics that has been viewed in over 100 countries and developed the Supporting Families with Cancer projects in association with the Genetics Education Centre (GENIE) at the University of Leicester. He is the clinical lead for the delivery of Paediatrics, Obstetrics & Gynaecology, Non-Malignant Haematology and Clinical Genetics national portfolio research studies (CRN) in the East Midlands. He is the rare disease lead for the 100,000 Genome Project in Leicester and the public and patient involvement clinical lead for the East of England Genomics Medicine Centre with the aim of reducing inequality of access to Genomic Medicine. He is the designer of the genome project eligibility criteria wheels for Health Education England and is on the Genomics England committee for patient involvement and access to genomics for black and minority ethnic groups. He is a national clinical advisor to the National Hereditary Breast Cancer Helpline and helped develop the award winning Prostaid male health App and is clinical lead of the United Against Prostate Cancer project, establishing tumour BRCA testing. He is joint clinical lead of the Paediatric and Genetics Clinical Research Facility at the Leicester Royal infirmary and is establishing a fragile X syndrome research group and patient self-navigation App project with the Genomic Medicine Service Alliance. He is a senior author of the newly commissioned book, Clinical Genetics and Genomics at a Glance as well as a children's book on DNA. On This Episode We Discuss:Ten years of the 100,000 Genomes Project (2012-2022)Advantages of using digital pedigrees tools such as the one developed by TrakGeneWhy it's important to have genomes from various ancestries representedImportance of utilizing digital pedigrees How the 100,000 Genome Project is going to change the role of genetic counselorsReclassifying variants as data is continuously being analyzedIf you want to learn more about what it's like to be a clinical geneticist, check out this article which follows Dr. Barwell through a day in the life, and you can find a list of Genomics England's publications here.To learn more about TrakGene, the pedigree drawing tool and clinical genetics database software company that we mentioned in this episode, you can head to their website or follow them on Twitter, Facebook, LinkedIn, and YouTube. You can also follow Dr. Barwell on Twitter and Facebook!Don't forget to enter our upcoming giveaway via social media next week for a lifetime subscription to TrakGene and a copy of “The Patient Will See You Now” by Dr. Eric Topol. You can also use code “DNATODAY” for a year free trial for TrakGene. Stay tuned for the next new episode of DNA Today on next Friday, November 4th, 2022 where we'll be defining quality genetic tests with Blueprint Genetics! In the meantime, you can binge over 205 other episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Today”. Episodes since 2021 are also recorded with video which you can watch on our YouTube channel. DNA Today is hosted and produced by Kira Dineen. Our social media lead is Corinne Merlino. Our video lead is Amanda Andreoli. See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, DNApodcast.com. Questions/inquiries can be sent to info@DNApodcast.com.

In this episode Dr Tanzi discusses whether Alzheimer's and other brain diseases are happening at a younger age and why that might be, along with his own protocol to maintaining a young and healthy mind! Dr. Rudolph Tanzi is the Director of the Genetics and Aging Research Unit, Co-Director of the McCance Center for Brain Health, Co-Director of the Mass General Institute for Neurodegenerative Disease, and Vice-Chair of Neurology (Research), at Massachusetts General Hospital, and the Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard Medical School. Dr. Tanzi co-discovered the first three Alzheimer's disease genes, including APP and directs the Cure Alzheimer's Fund Alzheimer's Genome Project, which identified the first neuroinflammation-related Alzheimer's gene, CD33. He has also been developing therapies for treating and preventing AD using 3D human neural glial culture models of AD and is now testing them in various clinical trials. Dr. Tanzi has published over 600 papers, received numerous awards, including the Metropolitan Life Award, Potamkin Prize, Smithsonian American Ingenuity Award, and was one of the TIME100 Most Influential People in the World. Dr. Tanzi is a New York Times bestselling author, who co-authored “Decoding Darkness” “Super Brain”, “Super Genes”, and “The Healing Self”. He has also hosted three PBS shows and made numerous appearances on network and cable news and medical television shows. In his spare time, he plays keyboards for Joe Perry, Aerosmith and other musicians. Professor Tanzi's page at Harvard https://brain.harvard.edu/?people=rudolph-e-tanzi Books by Professor Tanzi https://amzn.to/3kyqxVQ Super Genes: Unlock the Astonishing Power of Your DNA for Optimum Health and Well-Being https://amzn.to/3zsenSl The Healing Self: A Revolutionary New Plan to Supercharge Your Immunity and Stay Well for Life https://amzn.to/3kwwwKx Super Brain: Unleashing the Explosive Power of Your Mind to Maximize Health, Happiness, and Spiritual Well-Being https://amzn.to/3zx5h6Q Decoding Darkness: The Search For The Genetic Causes Of Alzheimer's Disease If you would like to support our channel, we'd love a coffee ☕…thank you! https://www.buymeacoffee.com/mhealthspan You can also find us on YouTube at https://www.youtube.com/c/modernhealthspan 15% off Bulletproof products at https://www.bulletproof.com/ with discount code HEALTHSPAN15. Renue By Science 10% discount code MHS at https://renuebyscience.com/all-products-2/ 10% off all products at DoNotAge with code MODERNHEALTHSPAN at https://donotage.org/

In this episode Dr Tanzi talks about some of the future potential options are to treat Alzheimer's once it has started and neural inflammation has set in. Dr. Rudolph Tanzi is the Director of the Genetics and Aging Research Unit, Co-Director of the McCance Center for Brain Health, Co-Director of the Mass General Institute for Neurodegenerative Disease, and Vice-Chair of Neurology (Research), at Massachusetts General Hospital, and the Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard Medical School. Dr. Tanzi co-discovered the first three Alzheimer's disease genes, including APP and directs the Cure Alzheimer's Fund Alzheimer's Genome Project, which identified the first neuroinflammation-related Alzheimer's gene, CD33. He has also been developing therapies for treating and preventing AD using 3D human neural glial culture models of AD and is now testing them in various clinical trials. Dr. Tanzi has published over 600 papers, received numerous awards, including the Metropolitan Life Award, Potamkin Prize, Smithsonian American Ingenuity Award, and was one of the TIME100 Most Influential People in the World. Dr. Tanzi is a New York Times bestselling author, who co-authored “Decoding Darkness” “Super Brain”, “Super Genes”, and “The Healing Self”. He has also hosted three PBS shows and made numerous appearances on network and cable news and medical television shows. In his spare time, he plays keyboards for Joe Perry, Aerosmith and other musicians. Professor Tanzi's page at Harvard https://brain.harvard.edu/?people=rudolph-e-tanzi Books by Professor Tanzi https://amzn.to/3kyqxVQ Super Genes: Unlock the Astonishing Power of Your DNA for Optimum Health and Well-Being https://amzn.to/3zsenSl The Healing Self: A Revolutionary New Plan to Supercharge Your Immunity and Stay Well for Life https://amzn.to/3kwwwKx Super Brain: Unleashing the Explosive Power of Your Mind to Maximize Health, Happiness, and Spiritual Well-Being https://amzn.to/3zx5h6Q Decoding Darkness: The Search For The Genetic Causes Of Alzheimer's Disease If you would like to support our channel, we'd love a coffee ☕…thank you! https://www.buymeacoffee.com/mhealthspan You can also find us on YouTube at https://www.youtube.com/c/modernhealthspan 15% off Bulletproof products at https://www.bulletproof.com/ with discount code HEALTHSPAN15. Renue By Science 10% discount code MHS at https://renuebyscience.com/all-products-2/ 10% off all products at DoNotAge with code MODERNHEALTHSPAN at https://donotage.org/

In this episode Professor Tanzi talks about SHIELD, his acronym for the things that you can do to protect your brain. S - Sleep, H - Handle Stress, I - Interactions with friends, E - Exercise, L - Learn new things and D - Diet and we dive into detail on a few of them. Dr. Rudolph Tanzi is the Director of the Genetics and Aging Research Unit, Co-Director of the McCance Center for Brain Health, Co-Director of the Mass General Institute for Neurodegenerative Disease, and Vice-Chair of Neurology (Research), at Massachusetts General Hospital, and the Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard Medical School. Dr. Tanzi co-discovered the first three Alzheimer's disease genes, including APP and directs the Cure Alzheimer's Fund Alzheimer's Genome Project, which identified the first neuroinflammation-related Alzheimer's gene, CD33. He has also been developing therapies for treating and preventing AD using 3D human neural glial culture models of AD and is now testing them in various clinical trials. Dr. Tanzi has published over 600 papers, received numerous awards, including the Metropolitan Life Award, Potamkin Prize, Smithsonian American Ingenuity Award, and was one of the TIME100 Most Influential People in the World. Dr. Tanzi is a New York Times bestselling author, who co-authored “Decoding Darkness” “Super Brain”, “Super Genes”, and “The Healing Self”. He has also hosted three PBS shows and made numerous appearances on network and cable news and medical television shows. In his spare time, he plays keyboards for Joe Perry, Aerosmith and other musicians. Professor Tanzi's page at Harvard https://brain.harvard.edu/?people=rudolph-e-tanzi Books by Professor Tanzi https://amzn.to/3kyqxVQ Super Genes: Unlock the Astonishing Power of Your DNA for Optimum Health and Well-Being https://amzn.to/3zsenSl The Healing Self: A Revolutionary New Plan to Supercharge Your Immunity and Stay Well for Life https://amzn.to/3kwwwKx Super Brain: Unleashing the Explosive Power of Your Mind to Maximize Health, Happiness, and Spiritual Well-Being https://amzn.to/3zx5h6Q Decoding Darkness: The Search For The Genetic Causes Of Alzheimer's Disease If you would like to support our channel, we'd love a coffee ☕…thank you! https://www.buymeacoffee.com/mhealthspan You can also find us on YouTube at https://www.youtube.com/c/modernhealthspan 15% off Bulletproof products at https://www.bulletproof.com/ with discount code HEALTHSPAN15. Renue By Science 10% discount code MHS at https://renuebyscience.com/all-products-2/ 10% off all products at DoNotAge with code MODERNHEALTHSPAN at https://donotage.org/

In this episode Professor Tanzi talks about the causes of Alzheimer's, from the plaques and tangles to neural inflammation, and what treatments exist for these symptoms. Dr. Rudolph Tanzi is the Director of the Genetics and Aging Research Unit, Co-Director of the McCance Center for Brain Health, Co-Director of the Mass General Institute for Neurodegenerative Disease, and Vice-Chair of Neurology (Research), at Massachusetts General Hospital, and the Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard Medical School. Dr. Tanzi co-discovered the first three Alzheimer's disease genes, including APP and directs the Cure Alzheimer's Fund Alzheimer's Genome Project, which identified the first neuroinflammation-related Alzheimer's gene, CD33. He has also been developing therapies for treating and preventing AD using 3D human neural glial culture models of AD and is now testing them in various clinical trials. Dr. Tanzi has published over 600 papers, received numerous awards, including the Metropolitan Life Award, Potamkin Prize, Smithsonian American Ingenuity Award, and was one of the TIME100 Most Influential People in the World. Dr. Tanzi is a New York Times bestselling author, who co-authored “Decoding Darkness” “Super Brain”, “Super Genes”, and “The Healing Self”. He has also hosted three PBS shows and made numerous appearances on network and cable news and medical television shows. In his spare time, he plays keyboards for Joe Perry, Aerosmith and other musicians. Professor Tanzi's page at Harvard https://brain.harvard.edu/?people=rudolph-e-tanzi Books by Professor Tanzi https://amzn.to/3kyqxVQ Super Genes: Unlock the Astonishing Power of Your DNA for Optimum Health and Well-Being https://amzn.to/3zsenSl The Healing Self: A Revolutionary New Plan to Supercharge Your Immunity and Stay Well for Life https://amzn.to/3kwwwKx Super Brain: Unleashing the Explosive Power of Your Mind to Maximize Health, Happiness, and Spiritual Well-Being https://amzn.to/3zx5h6Q Decoding Darkness: The Search For The Genetic Causes Of Alzheimer's Disease If you would like to support our channel, we'd love a coffee ☕…thank you! https://www.buymeacoffee.com/mhealthspan You can also find us on YouTube at https://www.youtube.com/c/modernhealthspan 15% off Bulletproof products at https://www.bulletproof.com/ with discount code HEALTHSPAN15. Renue By Science 10% discount code MHS at https://renuebyscience.com/all-products-2/ 10% off all products at DoNotAge with code MODERNHEALTHSPAN at https://donotage.org/

Dr. Rudolph Tanzi is the Director of the Genetics and Aging Research Unit, Co-Director of the McCance Center for Brain Health, Co-Director of the Mass General Institute for Neurodegenerative Disease, and Vice-Chair of Neurology (Research), at Massachusetts General Hospital, and the Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard Medical School. Dr. Tanzi co-discovered the first three Alzheimer's disease genes, including APP and directs the Cure Alzheimer's Fund Alzheimer's Genome Project, which identified the first neuroinflammation-related Alzheimer's gene, CD33. He has also been developing therapies for treating and preventing AD using 3D human neural glial culture models of AD and is now testing them in various clinical trials. Dr. Tanzi has published over 600 papers, received numerous awards, including the Metropolitan Life Award, Potamkin Prize, Smithsonian American Ingenuity Award, and was one of the TIME100 Most Influential People in the World. Dr. Tanzi is a New York Times bestselling author, who co-authored “Decoding Darkness” “Super Brain”, “Super Genes”, and “The Healing Self”. He has also hosted three PBS shows and made numerous appearances on network and cable news and medical television shows. In his spare time, he plays keyboards for Joe Perry, Aerosmith and other musicians. Professor Tanzi's page at Harvard https://brain.harvard.edu/?people=rudolph-e-tanzi Books by Professor Tanzi https://amzn.to/3kyqxVQ Super Genes: Unlock the Astonishing Power of Your DNA for Optimum Health and Well-Being https://amzn.to/3zsenSl The Healing Self: A Revolutionary New Plan to Supercharge Your Immunity and Stay Well for Life https://amzn.to/3kwwwKx Super Brain: Unleashing the Explosive Power of Your Mind to Maximize Health, Happiness, and Spiritual Well-Being https://amzn.to/3zx5h6Q Decoding Darkness: The Search For The Genetic Causes Of Alzheimer's Disease If you would like to support our channel, we'd love a coffee ☕…thank you! https://www.buymeacoffee.com/mhealthspan You can also find us on YouTube at https://www.youtube.com/c/modernhealthspan 15% off Bulletproof products at https://www.bulletproof.com/ with discount code HEALTHSPAN15. Renue By Science 10% discount code MHS at https://renuebyscience.com/all-products-2/ 10% off all products at DoNotAge with code MODERNHEALTHSPAN at https://donotage.org/

The Human Genome Project was an international scientific research project with the goal of determining the base pairs that make up human DNA. This week's Untapped philanthropy guest has taken a similarly scientific approach to philanthropy by analyzing the DNA of impact programs to determine what is and isn't working.  Tune in to this week's episode to hear from the Executive Director of the Center of Impact Sciences at the University of Chicago and the co-founder of the Impact Genome Project, Jason Saul, and learn about the new integration his team is deploying with Fluxx! To learn about Fluxx visit fluxx.ioTo learn about the Impact Genome Project visit impactgenome.org

Welcome Loves!I am SO glad you are here.This week I am joined by the amazing Dr. Lars Gunnar. A founder, educator and chiropractor in the Gonstead Method specializing in functional medicine, high performance, and prenatal care.We covered A LOT! Dr. Lars shares his philosophy and practice in healing and how our spine health impacts every other area of our lives…even our relationships! We also dive deep into flow state…what it is and how to get there. We talked about our own superpowers and how each of us have our unique superpowers…we just have to be open to seeing what they are!You're gonna like this, buckle up and let's dive in! What we dive into: The body is meant to be healthy.A History of Chiropractic…founded on whole body, whole life healing.The Gonstead System vs. other Chiropractic systems.When you speak to healing all parts of the nervous system you speak to blood supply, the brain, consciousness, all organ function…the whole body and energetic.Beginning to notice the subtleties in your body's messaging to recognize when you are in misalignment.Genetics are blueprints for your life, they don't fully dictate your life or health. It's up to you!We can do the simplest things that cause healing. We are complex enough that it takes intention.Turning inward to listen to what You are trying to tell You.Connecting to your heart, your empathy, and intuition as a way to grow your business.Realizing our Gifts.Our emotional breakdowns, trauma, and challenges can be the greatest catalysts for our calling activation.The spine projects the entire story of how we are eating, sleeping, treating ourselves, dealing with our emotional stories.Co-partnering in your health & wellness. Learning to be your own health advocate and a co-partner with the professionals you choose to work with you.It's not the pain that necessarily brings people to see Dr. Lars, it's what they can't do in their lives. Overcoming limitations with life, relationships, athletic goals, pregnancy…. So everyone can do the things in their lives that better the world.Embracing your superpowers! We talk about different ways our intuitive gifts and superpowers have shown up….and that these are available for EVERYONE!Getting into Flow State. It's about how we interact with the Universe. Thoughts are electric.We do best with routines as humans. Thriving with am, pm, and daily routines to elevate your health and connect you more deeply to flow state and life calling.Accessing your Primal Leadership. Thank you friends for listening in!Make sure you subscribe so you don't miss a single episode and would be SO grateful for your likes and reviews.So much coming your way...Amazing guests, New episodes, and a lot  happening at Chaos & Calm.Make sure you check out chaoscalm.com for all the news on courses, training, classes, events and while you are there check out all the free resources, tools, and inspiration!You can join in more of the conversation and community by clicking the link below for the In The Calm Community! All my love friends! I hope you have the most amazing week ahead, and see you soon. Connect to Your Community & Georgie:www.ChaosCalm.comITC COMMUNITYINSTAGRAM GEORGIE Connect with Dr. Lars Gunnar:WEBSITEINSTAGRAM Resources Mentioned:FLOW STATEHedonic SchedulingHuman Design

Dr. Tanzi is the Vice-Chair of Neurology, Director of the Genetics and Aging Research Unit, Co-Director of the Henry and Allison McCance Center for Brain Health, and Co-Director of the MassGeneral Institute for Neurodegenerative Disease at Massachusetts General Hospital. He also serves as the Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard Medical School. Dr. Tanzi received his B.S. (microbiology) and B.A. (history) at the University of Rochester in 1980 and his Ph.D. (neurobiology) at Harvard Medical School in 1990. Dr. Tanzi was a key member of the teams that discovered the first Alzheimer's disease (AD) gene, the amyloid precursor protein (APP) gene, and the two other early-onset familial AD genes, presenilin 1 and presenilin 2. As leader of the Cure Alzheimer's Fund Alzheimer's Genome Project, Dr. Tanzi identified several other AD genes, including CD33, the first AD gene shown to regulate neuroinflammation in AD. He also discovered the Wilson's disease gene and several other neurological disease genes. Dr. Tanzi's team was the first to use human stem cells to create three-dimensional mini human brain organoids of AD, dubbed “Alzheimer's-in-a-Dish”. This model was the first to recapitulate all three key AD pathological hallmarks. He and his team have successfully used these organoids to screen for approved drugs and natural products that can stop AD brain pathology. Dr. Tanzi has developed several novel therapies for AD including gamma secretase modulators targeting amyloid pathology (Phase 1 planned 2021) and AMX0035, which was already successful in a clinical trial of ALS and now under priority review for approval at the FDA. Dr. Tanzi also discovered that beta-amyloid plays a functional role in the brain as an anti-microbial peptide, supporting a potential role for infection in the etiology of AD. Dr. Tanzi serves as Chair of the Cure Alzheimer's Fund Research Leadership Group and on numerous scientific advisory and editorial boards. He has published over 600 research papers and is one of the top 50 most cited neuroscientists in the world. He has received the highest awards in his field, including the Metropolitan Life Foundation Award, Potamkin Prize, Ronald Reagan Award, Oneness in Humanity Award, Silver Innovator Award, the Smithsonian American Ingenuity Award, the Brain Research Foundation Award, and the Kary Mullis Award for Medical Research. He has also been named to TIME magazine's list of TIME100 Most Influential People in the World. Dr. Tanzi is also a New York Times bestselling author, who has co-authored the books Decoding Darkness, and bestsellers, Super Brain, Super Genes, and The Healing Self. Dr. Tanzi joins us to mark The One Way Ticket Show's 10th anniversary for our special series--a “one way ticket to optimal mental, physical and spiritual well-being”. On this episode of the program, Dr. Tanzi's conversation with Host Steven Shalowitz includes why today is rapidly becoming the golden age for solving age related brain diseases, lifestyle changes we can make to reduce the risk of Alzheimer's and questions around the brain-consciousness connection. Dr. Tanzi is just one of the engaging personalities featured on The One Way Ticket Show. During the regular season of the program, Host Steven Shalowitz explores with his guests where they would go if given a one way ticket, no coming back. Their destinations may be in the past, present, future, real, imaginary or a state of mind. Steven's guests have included: Nobel Peace Prize Winner, President Jose Ramos-Horta; Legendary Talk Show Host, Dick Cavett; Law Professor, Alan Dershowitz; Fashion Expert, Tim Gunn; Broadcast Legend, Charles Osgood; International Rescue Committee President & CEO, David Miliband; Former Senator, Joe Lieberman; Playwright, David Henry Hwang; Journalist-Humorist-Actor, Mo Rocca; SkyBridge Capital Founder & Co-Managing Partner, Anthony Scaramucci; Abercrombie & Kent Founder, Geoffrey Kent; Travel Expert, Pauline Frommer, as well as leading photographers, artists, chefs, writers, intellectuals, etc.

Why is hibernation something that bears and squirrels do, but humans don't? Even more interesting, what's going on inside a hibernating animal, on a physiological and genetic level, that allows them to survive the winter in a near-comatose state without freezing to death and without ingesting any food or water? And what can we learn about that process that might inform human medicine?Those are the big questions being investigated right now by a four-year-old startup in California called Fauna Bio. And Harry's guests today are two of Fauna Bio's three founding scientists: Ashley Zehnder and Linda Goodman. They explain how they got interested in hibernation as a possible model for how humans could protect themselves from disease, and how progress in comparative genomics over the last few years has made it possible to start to answer that question at the level of gene and protein interactions. The work is shedding light on a previously neglected area of animal behavior that could yield new insights for treating everything from neurodegenerative diseases to cancer.Please rate and review The Harry Glorikian Show on Apple Podcasts! Here's how to do that from an iPhone, iPad, or iPod touch:1. Open the Podcasts app on your iPhone, iPad, or Mac. 2. Navigate to The Harry Glorikian Show podcast. You can find it by searching for it or selecting it from your library. Just note that you'll have to go to the series page which shows all the episodes, not just the page for a single episode.3. Scroll down to find the subhead titled "Ratings & Reviews."4. Under one of the highlighted reviews, select "Write a Review."5. Next, select a star rating at the top — you have the option of choosing between one and five stars. 6. Using the text box at the top, write a title for your review. Then, in the lower text box, write your review. Your review can be up to 300 words long.7. Once you've finished, select "Send" or "Save" in the top-right corner. 8. If you've never left a podcast review before, enter a nickname. Your nickname will be displayed next to any reviews you leave from here on out. 9. After selecting a nickname, tap OK. Your review may not be immediately visible.That's it! Thanks so much.TranscriptHarry Glorikian: Hello. I'm Harry Glorikian, and this is The Harry Glorikian Show, where we explore how technology is changing everything we know about healthcare.It's April and spring is well underway, even though it's been a pretty cold one so far here in New England.It's the kind of weather that makes you want to pull the covers over your head in the morning and just sleep in. Or maybe just hibernate like a bear until summer is really here.But when you think about it, what is hibernation? Why is it something that bears and squirrels do, but humans don't?Even more interesting, what's going on inside a hibernating animal, physiologically, that allows them to survive all winter without freezing to death and without ingesting any food or water?And what can we learn about that process that might inform human medicine?Those are the big questions being investigated right now by a four-year-old startup in California called Fauna BioAnd my guests today are two of Fauna Bio's three founding scientists: Ashley Zehnder and Linda Goodman. I asked them to explain how they got interested in hibernation as a possible model for how humans could protect themselves from disease.…And how progress in comparative genomics over the last few years has made it possible to start to answer that question at the level of gene and protein interactions.We've always looked to the natural world, especially the world of plants, for insights into biochemistry that could inspire new drugs. But what's exciting to me about Fauna Bio is that they're shining a light on a previously neglected area of animal behavior that could yield new insights for treating everything from neurodegenerative diseases to cancer.So, here's my conversation with Ashley Zehnder and Linda Goodman.Harry Glorikian: Ashley. Linda, welcome to the show.Ashley Zehnder: Thanks, Harry, we're excited to be here today. It's going to be fun.Linda Goodman: Yeah, thanks for having us.Harry Glorikian: Yeah, I mean, well, you guys are someplace sunny and warm, and I'm actually I shouldn't say that it's actually sunny right now on the East Coast. So I'm not I'm not.Linda Goodman: Don't jinx yourself.Harry Glorikian: But the temperature is going to drop. Like to I think they said 18. So everything will freeze tonight for sure. So it'll, you know, it's one of those days, but. I want to jump right into this because we've got a lot of ground to cover. Like there's so many questions that I have after sort of looking into the company and sort of digging in and, you know, but even before we jump into what you're working on. Right, I really want to talk about hibernation. Maybe because I'm jealous and I'd like to be able to hibernate. I have sleep apnea. So sleep is a problem. But humans don't hibernate. But there's a ton of other mammalian species that that do. And sometimes I do feel, though, that my teenager hibernates, but that's a different issue. So, but, what what is interesting to you about hibernation from a physiological point of view. What what goes on with metabolism or gene expression during hibernation, that's that's not found in humans, but that could be relevant to human health?Ashley Zehnder: Yeah, I think this is a great question, Harry, because I think both Linda and I came to fauna from different backgrounds. I came from veterinary science, Linda from comparative genomics. We can go into our details later, but neither of us really appreciated the amazing physiology of these species. There are some of the most extreme mammals on the planet, and there are hibernating bears and literally every group of mammals. Right. This is something Linda specializes in. But there are primates in Madagascar that hibernate very similar to the 39 ground squirrels that we tend to work with. So it's this really deeply conserved trait in mammals, including primates. And, you know, it kind of highlights for us what our genes can do when they're adapted for extreme environments. And so that's kind of the lens that we take when we look at hibernation. It's how do these species protect their own tissues from being nearly frozen for six, seven months out of the year, having to protect their brains, their hearts, all their vital organs? They're not eating, they're not drinking. They're not moving for these really deep bodied hibernaters. When you think of 100 kilogram animal that's not eating for seven months, how do they survive that? Right. And it has to do with metabolic rates that change 200- to 300-fold over the course of a couple of hours. It has to do with oxygenation changes and protection from oxidative stress and ischemia reperfusion. And so if you look at a tissue by tissue level, you can start to see how these animals are finally adapted to protecting themselves from from damage. And then we can start to say, well, this is similar damage to what we see in human diseases. And that's why this is such an interesting system, because it's so dynamic and because it happens across so many groups of mammals, it really lends itself to this comparative genomics approach that we take to drug discovery.Harry Glorikian: Yeah. Because I was wondering sort of like what ways of healing from different sort of traumas and conditions do hibernating animals have that that humans don't, that we sort of maybe wish we did? It's sort of like, you know, almost Marvel or one of those things where you like go to sleep, you wake up, you've totally healed again, which kind of be kind of be cool. Yeah. So, you know. But when did scientists first begin to think about whether having a better understanding of hibernation might help us solve? Some of these riddles that we have in human health. I mean, it surely it can't be like a new concept. It has to go further back. I mean, what has changed recently to make it more actionable? I mean, is it, you know, omics, costs coming down that are making it easier, computational capabilities that are, you know, making all these come together? I mean, those. What do you guys. What's. What's the answer? You guys know the answer better than I do.Ashley Zehnder: I'll comment on a little bit on the physiology, and I will let Linda talk about the data revolution, because that's that's really what she knows very intimately. So from a physiology standpoint, these are species and not just hibernaters, but a lot of other species that we've been studying since the early 1900s, 1950s. I mean, these are some of our earliest biological experiments and our earliest understandings of biology. We're not necessarily done by studying humans. A lot of that was done by studying natural disease models, right? How did we figure out that genes cause cancer? So it's a little bit of a tangent, but bear with me, it was not by studying human cancer, it was by studying Rous Sarcoma Virus and how that virus picked up bird genes and then turn them on. Right and other in other individuals. So but then kind of this almost the same year in 1976 that we figured out that genes cause cancer by studying chickens. 1974 we figured out how to genetically modified mice. And we sort of figured out that like, okay, maybe we don't need to study natural biology anymore. And so I feel like we sort of lost a lot of those skills and figured out we had humans and we had model organisms and we were done. And I think now we're kind of in this renaissance where people are realizing that actually there's still a lot of natural biology that we can learn from. But it's being powered now by this data revolution and the decrease in cost and sequencing and availability of omics data like RNA. Seq and then I will pitch that over to Linda because that's really what she knows best.Linda Goodman: Yeah, yes, absolutely. You know, Ashley's right. And I think just to add on to that, that there was this issue in which there were a lot of field biologists out there working with these really fascinating hibernating animals. They knew a lot about what these animals could do, the extreme environments they were exposed to, that they could overcome, they could protect all of their tissues. And there was so there was a group of field biologists who knew all that information. And then on the other side, you have all of these geneticists who are studying the genomes of probably humans and mouse and rat. And they weren't really talking to each other for a long time. And I've been in the genomics field for at least a decade, and not until very recently did I even hear about all these amazing adaptations that these hibernating mammals have. So I think some of it was just a big communication gap. And now that the genomics field is starting to become a little more aware that all these exciting adaptations are out there that we can learn from, I think that's going to be huge. And yes, of course, it certainly does not hurt that there's been a dramatic drop in sequencing costs. We can now sequence a reference genome for around $10,000. That was unheard of years ago. And so a lot of these species that people would previously consider untouchables because they were not model organisms with a pristine reference genome, we can now start to approach these and thoroughly study their biology and genomics in a way that was not possible several years ago.Harry Glorikian: Yeah. I was thinking I was, you know, I was laughing when you said $10,000, because I remember when we did the genome at Applied Biosystems and it was not $10,000.Ashley Zehnder: Yeah.Harry Glorikian: Yeah. And it took I remember Celera, we had an entire floor of sequencers working 24/7 I mean, it was an amazing sight. And now we can do all that, you know, on a.Ashley Zehnder: Benchtop. Benchtop. Exactly. On a benchtop.Harry Glorikian: So. But, you know, it's interesting, like in a way, studying animals to learn more about disease mechanisms seems like a no brainer. I mean, we share a, what, about 99% of our DNA with chimpanzees. And for those listening. Yes, we do. You know, I'm sure there's people out there that, like, bristle when I say that. But what is it, 97.5% of our DNA with rats and mice. That's why we use all these things for sort of safety and effectiveness of drugs meant for humans. But. Still, I'm not used to drug hunters starting out by looking at animals, you know? Why do you think it's taken the drug industry, although I'm I say that very loosely, [so long] to wake up to that idea?Ashley Zehnder: Yeah. I think it's I think it's again, this almost reversal of the paradigm that exists today, which is let's take a human disease that we want to make a new drug for. Let's take a mouse and let's try to genetically manipulate that mouse to mimic as closely as possible what we see in the human disease. And those are always imperfect. I mean, I did a cancer biology PhD at Stanford, and there's that trope of like, Oh, if I had a dollar for every time you occurred mouse in a human right, it would need to work anymore. That's replicated across many fields, right? They're not good models. And so we're saying like obviously that doesn't really work for discovery. It's fine for preclinical and safety and you have to use those models. But for pure discovery, that's not where you want to be, right? Instead, you want to take the approach of saying, where has nature created a path for you? Where is it already solved this problem? And I think there are companies like Varian Bio who are doing this in human populations. We're saying, let's look at humans that have unique physiologies and a unique disease adaptations. And of course then you have to find those niche pockets of human populations.Ashley Zehnder: So that's not a not a simple problem either. But the approach is very analogous. What we're saying is we can use that rare disease discovery approach and just expand that scope of discovery. Look at highly conserved genes, look at how other species are using them to reverse how phosphorylation in the brain to repair their hearts after damage, to reverse insulin dependence. To heal, we'll heal their tissues or regenerate stem cells. Let's just see how nature did it right and just mimic that instead of trying to fix something that we artificially created. So it's literally reversing that paradigm of how we think about animals and drug discovery. But you have to know how to do that. You have to know which models are correct. You have to know how to analyze 415 genomes together in an alignment which is really complicated. Linda knows how to do that, so you have to know how to do it correctly, although you could screw it up very badly. So there's a lot of expertise that goes into these analyses and also again, the data availability, which wasn't there nearly a decade ago. So.Harry Glorikian: So I asked this question out of pure naivete, because I'm not sure that I could sort of draw a straight line. But, you know, which drugs were have been discovered through research on genetic mechanisms of disease in animals. Is there, are there?Ashley Zehnder: You know, I think directly it's a new field. Right. So I think, Linda, you and I have looked at some examples of looking at drugs for narcolepsy, looking at dog genetics and studies, looking at muscle disorders in certain species of cattle that have naturally beefed up muscles and translating those into therapies. I mean, there are examples of looking at animals for things like genotype, right, came from Gila monster venom, although that's not strictly a genetic program. Right? So I think this idea of looking at natural animal models is a source of innovation. It's just that, again, the data wasn't really available until fairly recently, but we know the strategy works by what's been done on things like PCSK9 inhibitors in humans, right? It's a very similar approach to that. It's just expanding that scope of discovery.Harry Glorikian: So because you guys raised money and you guys are moving this forward, sort of and I don't want you to tell me anything that's confidential, but. So what was the pitch when you when you put that in front of everybody?Ashley Zehnder: It was really that, look, drug discovery right now is really been hampered by a lack of innovation. And we're really stuck in looking at these very kind of currently limited data sources, which is humans and again, these handful of really imperfect animal models. But we can take what we've learned from working with human genomics and really greatly expand the opportunities for a number of diseases that still don't have good therapies. Right. We've had the human genome for really close to 20 years now. We spent a lot of money sequencing it. And still, if you go back and look at the FDA approvals in the last two years, which I did by hand a while ago, or more than three quarters of those are not new targets. They're new drugs for a new indication or new drugs, same drugs before a new indication or they're kind of meta pathway drugs or they're drugs for which we still don't know the mechanism. It's some small molecule. It's been around since fifties. And so like where is the innovation in the top ten diseases of people still have it changed? So like where I pulled these two headlines right not too long ago, one from 2003, which is like the era of the genomics revolution. Right? And then one from 2019, which was the genomics revolution question mark. Right. Like we're still sort of waiting for it. And so what is that missing piece of data that's really going to allow us to really leverage the power that's in the human genome? And to do that, we have to put our own genes in an evolutionary context to understand what's important. That's been that third dimension of genomics that's been missing. So it's really not necessarily about any particular species that we work on, all of which are amazing. It's really about using that data to shine a better light on what's important in our own genome. And so that's a lot of the pitches, like how are we going to use our own genome better and find better treatments?Harry Glorikian: Yep. Understood. So. You have a third founder, Katie Grabek. Right. So. Tell me about yourselves. I mean, did the three of you get interested in comparative genomics and hibernation? How did you come together? How did you decide like, oh, hey, let's do a startup and get this thing going in this area? So tell tell me the origin story.Ashley Zehnder: Linda, do you want to kick off?Linda Goodman: Sure. I think it all really started, Ashley and I initially started batting a few ideas around. We both had this understanding that that drug discovery today did not look outside of human mouse rat very much. And we both understood there was this wealth of animal data that's just waiting to be used and no one was doing it and we couldn't really figure out why. And we were having trouble figuring out exactly which animal we wanted to study and which diseases we wanted to study. And it just so happened that we lucked out. There was another woman in our lab at Stanford, Grabek, who had the perfect study system for what we were thinking about. She had these amazing hibernates our animals that have exquisite abilities in terms of disease, resistance and repair. And once she started talking about all the amazing phenotypes these animals have, we thought, wow, that would make a great study system to make the next human therapeutic. Yeah. And I think it's interesting that both Katie and Linda have human genetics PhDs. Right. So I think both of them and Linda can expound on this. But from Katie perspective. Right, she she went in to do a human genetics Ph.D. trying to understand how genes can be used to improve human health and shouldn't be rotating the lab of somebody who studied the 39 ground squirrel and said this physiology is way more extreme than anything we see in humans, but they're doing it using the same genes.Linda Goodman: What are those genes doing in these animals that we can adapt for human therapeutics? And so she brought that work with her to Stanford and was really one of the preeminent researchers studying the genetics and genomics of these species. My background is I'm of Marion, so my clinical training is in exotic species. So as a clinician, I treated birds, mammals, reptiles and saw that they all presented with different kinds of diseases or in some cases didn't present with diseases like cancer that were super interesting. And then coming to a place like Stanford to do a PhD, it was working with a bunch of human researchers, human focused researchers. They're all generally human researchers, but you know what I mean? It's a little bit tricky with the nomenclature. Generally, I have my doubts about, you know, maybe there's some chimpanzees doing research somewhere, people studying human diseases, right from a human lens who are completely ignorant of the fact that animals often also had these disease traits or in some cases were resistant to them. So there was this huge disconnect there of of biologists and veterinarians and physiologists who understood all these traits across different species and the people who knew the molecular mechanisms, even though a lot of those are shared.Linda Goodman: And so one of the things that I found really interesting just from a cancer perspective was that a lot of our major oncogenes are highly conserved because these are core biological genes that if you screw them up, will give you cancer. But there's an evolutionary pressure to maintain these genes. And so there's a reason why they're conservative, because they're really important biologically, and that's true across many other diseases as well. So from that perspective, I was really interested in this intersection of human and animal health. I always wanted to do more genomics myself and just never had had the training. Linda had always been interested in veterinary science, and so we kind of immediately started collaborating and saying, Look, look, there's a huge opportunity in this, again, third space, third dimension of genomics that people are not looking at. What do we do trying to start a comparative genomics company? I'm using air quotes here for the podcast listeners is a little bit broad. Where do you start? And I think Katie really gave us that start in saying, here's a model. We have a biobank of samples that are proprietary to fauna. We have an expert in this field. We have a model that's good for so many different diseases. Let's prove that the process works here and then we can expand into multiple disease areas.Harry Glorikian: You know, you got to love, people I think, underestimate that magic that happens when the right people get together and the spark happens, right? I mean, I'll take that. Any day. I mean, I love coming up with a plan and then, you know, working to the plan. But when it happens, when the right people in the room and they're all get excited, those are those are the most incredible start ups, in my opinion. Yeah. So you're starting off with targets in heart disease, stroke, Alzheimer's, diabetes, very different areas, right? Cardiovascular, neurodegenerative and metabolic. So. Why start with those areas in particular?Linda Goodman: So I think for us it was really again showing showing what we can translate from this model. So some of the phenotypes that we see, the traits that we see in the ground squirrel, which is predominantly one of the species we use for our work, is that they're exquisitely resistant to ischemia, reperfusion injury. So the kind of injury that gets, if you have a heart attack and you go and get the heart attack on block, you get this rush of warm, oxygenated blood back into your heart that can actually be damaging. And that's a lot of what causes damage after a heart attack, what these animals happen, they do this 25 times over the course of a 6 to 7 month hibernation cycle. And if you look at their hearts in the peak of one of these periods, there is an upregulation of collagen, which is cause of fibrosis. There's an upregulation, there's histologically, there's a little bit of damage. It's less than you would I would have, but there's a little bit there. But if you get to the end of that whole cycle and look at their hearts, they look normal and they do it again next year. Right. So you and I could not survive 25 of these attacks over six or seven month period, right? Obviously not. So let's pick the strongest phenotypes we have in these animals and let's show that we can use information from that and come up with genes and compounds that are protective in our more standard models of these diseases.Linda Goodman: And that's what we did really with the first round of data that we had is we generated four genetic targets and two compounds that came out of the heart data that we had from hibernating and that we tested them in human cardiomyocytes in a dish and said if we take oxygen and glucose away from these cells, they get really unhappy and die and we could double survival of human heart cells in a dish. And then we said, okay, great, let's actually move this into animals. And so we used AAV or some of these viral vectors to then knock down genes in vivo in hearts of rats. So we literally tied off a coronary artery and then let the blood come back in and saw that we could almost fully protect these hearts from damage by knocking down genes that we found in the hibernating data. So it was really closing that loop and saying, where are the strongest traits? Can we show that this works? And then it was really figuring out where are the really large areas of unmet need. And so in terms of metabolism, we end up connecting with Novo Nordisk, which is a publicly disclosed partnership. They are very focused on obesity. We have a model that increases this metabolism, 235 fold over an hour. Name another model that can do that, right?Harry Glorikian: I need that. I need that. I need like, because...Ashley Zehnder: We all need that!Harry Glorikian: I could get rid of a few pounds right around here.Linda Goodman: Exactly. So then it's really just figuring out where are the unmet needs, who is really interested in these areas we're looking at and do we have unique data that speaks to those models? And that's really we just try to be guided by the biology and saying, where do we have unique data sets that can answer high unmet needs?Harry Glorikian: Okay. Well, all I mean, all sounds super exciting if we can make the translation, you know, in the right way and find those targets. But. You guys have built up a significant biobank, right? I understand you have a huge database of genomic readout from various hibernating animals. Can you tell us a little more about the extent of that biobank? How did you collect the data and how unique is that database in the industry?Ashley Zehnder: Yeah. Linda, do you want to talk a little bit about the data sources that we're currently using at Fauna?Linda Goodman: Yeah. So maybe, you might be the best person to talk about the Biobank and then I can talk about all the other data sources layering on top of that.Ashley Zehnder: Yeah, I'll talk a little about the BiobanK. So we have yeah, we have a number of different data sources. The Biobank is one of them and probably one of the main ones that we use. So Katie, during her PhD, built a really unique biobank of very precisely time tissue samples from 39 ground squirrels across the whole hibernation cycle. And the reason why that timing is so important is because the cycle is so dynamic. If you don't have really precise sample timing, you end up with a big kind of smush of data that you can't tease apart by having really precisely timed data points, you can separate these genes into clusters and know exactly kind of where you are in time. And that timing relates to the physiological injuries that we study. So we know what time points their hearts are protected because those physiological studies have been done. We've looked at those time points very specifically. So we have that biobank of samples that we in licensed as founding IP at Fauna CANI literally drove it across the country in a U-Haul because we didn't trust anybody to move it. So that's that's now in our freezers and Emeryville with a cadre of backup batteries to protect it.Ashley Zehnder: So that's the founding data that we have. And that's been really crucial because I look at other companies trying to use data for drug discovery, particularly in the early stage. A lot of it is kind of publicly available data or cell lines or kind of shared data sources. And part of what is unique about font, as we literally have truly novel data sources that we're starting with that are wholly owned that we control and we know the quality of those. So that's really the Biobank that we have is and it's 22 different tissues. I mean, it's brain, it's kidney, it's lung, it's hard. It's liver or skeletal muscle. Right? Pretty much every kind of tissue you would want in that founding biobank. But then on top of that, I think what we've done with the other data is super important. Yeah. And so we layer on top of that all sorts of publicly available data and also data we've been able to source, such as human data from the UK Biobank. But I really want to hit on the point of, of why the model species hibernate or data is so different. All of the other data that most people work with is trying to compare animals that are healthy to animals that are diseased, or people that are healthy to people who are have disease. What's really unique about the model species that we're working with is we're trying to figure out why they have these superpowers in terms of disease, resistance and repair.Ashley Zehnder: So it's kind of the other end of the spectrum that we're making this comparison between a normal, normal hibernate or during, say, the summer months and then a hibernate or that has gene expression patterns that mean that it's resistant to many diseases and it can repair tissues when it gets damaged. So it's actually quite different from the normal types of comparisons that others would make. But yes, and then we integrate publicly available data from sources like Open Targets Reactance. And one of the other data sets that we work with that's that's valuable is that we go back through literature that is relevant to the disease, indications that we're going after. And we have a team of curators that mines these papers that where the biology is relevant and we integrate those transcriptomic studies generally into our database. And that that really helps with our comparisons. And I can kind of give you an example of the way that we would do this type of cross-species analysis compared to what other what others in the industry might do if they were just looking at humans or say, just looking at mouse and rat is that, you know, if you're if you're just looking at at a human study and you're trying to say, look, for what genes do we think are involved in heart failure? You would look at, say, transcriptomic, differences between healthy human hearts and failing human hearts.Ashley Zehnder: And then you would have some type of gene list where you'd see the genes that have differential regulation between those two groups. And it fa not we we look at that type of data and then we also look at hibernate or data and then we can compare that. And that's really where the magic happens because we can look at hibernate hours when their hearts are protected during the winter months. So we have an example of these are genes that are involved in protection and then compare that to the summer months where they're not protected. And then we can integrate both of those to analyses so we can say what's really different about a human heart when it is failing to a hibernating heart when it is protected. And we do very fancy types of network analyses and then we layer on all of these data from external sources and the really exciting moments where we see these networks light up with the exact regulation patterns we are expecting that is relevant to our biology. Those are really fun. And I would say the other data source, Linda, that would be good to touch on is the genomic data, right? I think the comparative genomics data. So maybe give a little context on that. I think that really broadens the the views point of what we work with.Linda Goodman: Yeah, absolutely. So that's another data source that we work with. We have a collaboration with the Broad Institute that is one of the leaders of the Zoonomia Project that has in the neighborhood of 250 mammals in a in a big alignment. So we can do comparative genomics across all of these animals. And what we like to look for are comparing the genomes of animals that have a specific phenotype to others that don't. So for example, what is different in the genomes of hibernaters compared to the mammals that cannot hibernate? And we typically do this with how fast or slow evolving genes are, right? So if a gene doesn't accumulate very many mutations in hibernate hours, then it's probably pretty important for hibernation because there's a lot of purifying selection on that versus say, in other mammals that are not hibernaters, like like a human or a rat. It got a lot of mutations in it because it didn't matter as much for those animals. So that's another way of pinpointing the genes that are really important to hibernation. And we know, of course, that some of those might relate to the overall hibernation trait, but many of them are going to be disease relevant because they've had to evolve these genes in a way to protect their hearts and their other organs from these extreme environments they're in during hibernation.Harry Glorikian: So that, if I'm not mistaken, so did the Zoonomia Consortium, there was a big white paper about comparative genomics published in Nature.Ashley Zehnder: Nature last year? Yep. Two years ago. Yeah. A little bit.Harry Glorikian: Yes. Time seems to blur under COVID.Ashley Zehnder: Yeah.Harry Glorikian: How long have I been in this room? Wait. No.Harry Glorikian: But. Can you guys I mean, because doing comparative genomics is not, you know. It's not new necessarily, but can you guys summarize sort of the. Arguments or the principles of that paper, you know, quickly. And then, you know, my next question is going to be like, do you feel that Fauna Bio is part of a larger movement in science and drug discovery that sort of gaining momentum? So I'll, I'll I'll let you guys riff on that launch.Ashley Zehnder: Linda, you're you're the best one to do a perspective on that paper for sure.Linda Goodman: Sure. Yeah. You know, I think this is really born out of the concept that in order to identify the most important genes in the human genome, we need to be looking at other animals and more precisely, other mammals to see their pattern of evolution. Because if you see a gene that looks nearly identical across all other mammals, that means that it's really important. It means that it has been evolving for somewhere in the neighborhood of 100 million years, not accumulating mutations, which really translates to if you got damaging mutations in that gene, you were a dead mammal. Those have been selected out. And that's really how you can tell these are the key genes that are important to to your physiology, the difference between life and death. And you can't understand those things as well by just looking within humans and human populations. We're all too similar to each other. But it's really when you get to these long time scales that the statistics work out where you can see, okay, this has been this mutation has not happened in 100 million years. We don't see it in anybody's genome. So that is obviously very important. And that's just this other way of looking at our own human genome that helps highlight the genes that are going to be important to diseases. And I think, you know, another side to this paper related to conservation and the fact that a lot of these animals with really exciting genomes, the ones that are exciting to people like us, are those that have these really long branch lengths where they're they're kind of an ancient lineage. And that's really where the gold is, because that helps us even more understand how quickly or slowly some of these genes are evolving, and it related to trying to conserve some of these species as well.[musical interlude]Harry Glorikian: Let's pause the conversation for a minute to talk about one small but important thing you can do, to help keep the podcast going. And that's leave a rating and a review for the show on Apple Podcasts.All you have to do is open the Apple Podcasts app on your smartphone, search for The Harry Glorikian Show, and scroll down to the Ratings & Reviews section. Tap the stars to rate the show, and then tap the link that says Write a Review to leave your comments. It'll only take a minute, but you'll be doing a lot to help other listeners discover the show.And one more thing. If you like the interviews we do here on the show I know you'll like my new book, The Future You: How Artificial Intelligence Can Help You Get Healthier, Stress Less, and Live Longer.It's a friendly and accessible tour of all the ways today's information technologies are helping us diagnose diseases faster, treat them more precisely, and create personalized diet and exercise programs to prevent them in the first place.The book is now available in print and ebook formats. Just go to Amazon or Barnes & Noble and search for The Future You by Harry Glorikian.And now, back to the show.[musical interlude]Harry Glorikian: I should say congratulations because you guys did raise a $9 million seed round last fall from a group of venture funds, some in life sciences, some more general. Right. What does that funding do? What is it? What does that unlock next?Ashley Zehnder: You. I will answer that question. I do want to jump back to your other question that was kind of is this part of a larger movement and comparative genomics? Right. I think that's an important question. I think you sort of hit the nail on the head there. We were invited to a symposium in August of 2019 called Perspective and Comparative Genomics that was held at NHGRI in Bethesda. And I think there's a recognition and actually some of our grant funding is also through NHGRI. And I think there's a recognition from the folks who sequenced the human genome, that they don't have all those answers. And so it's an interesting time where we realize that there is this kind of other data out there that can help us really understand that better. And it does feel a little bit like a rising tide. And so that's that's something that I think is important to recognize. But in terms of the seed round, really, that was meant to expand the platform and the pipeline that we built with our initial funding back from Laura Deming and Age One and True Ventures, who led around for us in early 2019. It's really saying like that initial $3 million or so is really to say like, does this work or is this crazy, right? Can we it's just a crazy idea.Ashley Zehnder: And that's what we really started to generate those first few animal studies that said, yes, actually we can find genes and compounds from this data that meaningfully affect not only human cells, but animal models of human disease. And now we're really expanding into new disease areas. We're looking at areas like fibrosis. We're looking at areas like pulmonary disease. We've got some really interesting data coming out of animal models of pulmonary hypertension with a compound that we found on our platform. We've got the collaboration with Novo Nordisk, which of the five genes that they tested in animals? We have one that has a significant obesity phenotype. So I mean, 20% hit rate on a novel target discovery in vivo is not bad, right? So we've gotten to the point now where repeatedly over multiple disease areas, we've seen that between 20 and 30% of our either compounds or genes are hits, which shows us that this is not only kind of a we got lucky in cardiac disease, but actually this is a process for enriching for important drug targets. And now it's a matter of really expanding the pipeline. We brought on a really experienced head of Therapeutics Discovery, Brian Burke, who spent 20 years at NIBR running very early discovery programs and then seeing programs go into the clinic.Ashley Zehnder: He worked on drugs like Entresto and then worked on a couple of startups after that. So he's kind of gotten both big pharma and startup experience, and his job at Fauna is to really look at the menu of things that we're presenting him from an early research and discovery phase and picking the winners and really figuring out how to take them forward and also killing the programs that are less exciting to him for a number of technical or practical reasons. So that's been really, really helpful to have someone come in truly from the outside and take a look at the science at Fauna and say this is as good or better as anything that I've worked on before. I'm really excited to work on this, and that's been kind of a nice external perspective on on the science and the pipeline at Fauna. So that's really what the $9 million is for. It's really expanding a lot of the computational expertise and and progress and Linda can talk a little bit about that, but also just expanding into new disease areas as well.Harry Glorikian: Understood. So, you know, on this show, like, I talk a lot about, you know, technology, data, and how it's all affecting health care, which this all fits into. But one of the things we talk about a lot is how crappy, terrible, I should use, you know, terrible, right, electronic health records are in the lack of interoperability between them. And Ashley, you actually wrote a paper.Ashley Zehnder: I did, yeah, veterinary medical records are just as bad, actually, veterinary medical records are probably a little bit worse, if it's possible.Harry Glorikian: And to be quite honest, I'm sorry, I just hadn't thought about Fifi or Rover and their...Ashley Zehnder: Their medical records.Harry Glorikian: EHR. Is like is the problem bigger, even, when it comes to functional genomics? I'm trying to think of like obtaining and storing and analyzing 'omics of different species. I mean, who's working on this? Is that part of the Zoonomia consortium? Right. I'm just trying to think it through, like, how do you get all this information and then look at it across all these different species. And at some point, you know, look looking at it against humans also.Ashley Zehnder: Yeah. I'll let Linda talk about the genomics side. I'll comment on sort of some of the validation, some of the externally curated data that Linda talked about. I think this is actually becoming a really important data set. It was a little bit of a slow burn to figure out how to get it and to curate it. But there are a lot of studies now coming out and not just your traditional model organisms, but naked mole rats and long lived rock fishes and primate studies and bats and all kinds of people looking at genomics and RNA seek metabolomics and proteomics across these species that have interesting phenotypes. The problem is, every one of those researchers really heads down on their own species of interest, right? Nobody's saying, oh, well, actually, we're seeing the same genetic signature in these bats that we're seeing in the naked mole rats that we're seeing in some of these long lived fish. Right. But that data is not in a very friendly format. So we were like originally we were like, okay, we're going to write some scripts, we're going to try to pull some of the stuff out of supplemental tables. It's going to be awesome. No, no, no. We have very highly trained curators who work on this data and bring it in. And we have a very standard pipeline and a process and a way to normalize the data across different studies and standard ontologies and ways to clean up this data in a way that it can be integrated with the genomics coming out of the platform. And that is a tedious and painful and ongoing effort to bring in all this data.Ashley Zehnder: Now, we have data from well over 330 individual studies, over 30 species. I think Linda, you told me it was like more than 800,000 gene entries at this point that's curated and that's kind of growing month over month. So now that's becoming part of our defensible moat, is that we've taken the last two or three years, again, slow burn, pulling all this data together in a way that it can be reused. And now we can turn a paper around and put it on a platform in a week or two. So we're kind of always scanning for these studies. But yeah, it's, it's, it's out there, but it's not always in a usable format without a lot of pain and effort. And so we've kind of put that pain and effort into getting that data in a place that we can use it. And then, of course, the comparative genomics is like a whole 'nother level of complexity.Linda Goodman: Yeah, so I can talk a little bit about how we do that within the comparative genomics community and how we've done that for Zoonomia. Because I referenced before that we like to do these sorts of studies to examine the genomes of hibernate ers and non hibernate and figure out what's different. And you'd think it would be a trivial question who is a hybrid nature amongst mammals? But it's actually not. And so along with our collaborators Alison Hindle and Cornelia Santer, as part of the Genome Project, Fauna tried to go through and categorize every every genome that was in Zoonomia. So we're talking about around 250 mammals for is it a hibernater, or is it not? And you'd be surprised how often it was digging through literature from the 1970s and someone would say, this animal is not often seen during the winter. So we think it hibernates and it's not always the most satisfying. And so it is an extremely tedious effort, but well worthwhile to go through and say this animal, I'm very sure, hibernates. This one, I'm very sure does not. And then there's this third category of animals that were unsure about we're going to remove those. And it's tedious, but you have to do that part, right? Because if you do the analysis with bad data, you're never going to find the genes that you want. And Linda, I remember you telling me when you were going through this very painful process, I think your threshold for being a perpetrator, quote unquote, was that you could drop your metabolism like 50%. Correct me if I'm wrong, and humans could go down to like 40 like in certain instances, like humans are almost there. You know, it's it's hard to know when there is only one paper about it, but certainly there are some really deep meditative states and humans and low oxygen environments where, you know, we're getting kind of close to the area where we might say that that's a hibernated, but certainly not the duration that you get out of hibernation. But it's it's it surprised me to see how close how much how much metabolic flexibility there really is when you start to look at it. Yeah.Harry Glorikian: Yeah. We've got to go talk to the monks.Linda Goodman: Absolutely. Absolutely. You know, we have that in mind. It sounds like an interesting travel experience. Yeah.Harry Glorikian: So I want to jump back for a second because. You guys don't necessarily have from what I have pieced together, the normal sort of like startup story. Right. First of all, you're an all female founding team, right? Highly unusual, right? Not something I see every day. You guys started at an accelerator program in San Francisco called Age One.Ashley Zehnder: Age One.Harry Glorikian: And then you moved to QB3 and the East Bay Innovation Center.Ashley Zehnder: Yep.Harry Glorikian: And then I think they helped you with some paid interns.Ashley Zehnder: Well, we got some from Berkeley. Yep, we did.Harry Glorikian: Yeah. And then you went through a SBIR grant.Ashley Zehnder: A couple of them.Harry Glorikian: From the Small Business Administration. And then a small business technology transfer grant from the Human Genome Research Initiative at NIH. Right.Ashley Zehnder: Yep.Harry Glorikian: I'm hopeful, hopefully my notes are all correct. Talk a little bit about the on ramp or infrastructure today for sort of seed stage startups like you. I mean, what were the most important resources?Ashley Zehnder: This is such an important conversation. I'm really glad you're asking this question. We had a call with a reporter from Business Insider yesterday who was talking to all three of us about this early founder ecosystems in biotech and sort of East Coast versus West Coast ways of starting biotechnology companies. Right. And that is a whole do a whole podcast on that, let me tell you. But I will say that there are a lot of resources for, let's call them founder led bio. Right. In the West Coast, which is kind of the buzzword these days, but people really supporting the scientists who originate the concepts and training them to be founders as opposed to assuming that you need to bring in an experienced CEO to run a company at this stage. Right. So I think we were very fortunate to meet Laura Deming at Stanford, who is one of the founding VCs. And longevity before that was a buzz word, right? She was one of the first longevity funds, literally Longevity Fund, and is really been a champion of founders, starting companies and really training founders to start companies who are deep science founders. So we started in age one. It was the first batch of age one. We're still very close to that cohort of companies doing interesting things from machine learning and image analysis through pure therapeutics development. And then Laura really helped us, her, her. We asked her later, like, why did you end up investing in us? She said, Well, the science was amazing.Ashley Zehnder: This is totally a field with so much promise. I just needed to teach you guys how to pitch. The science was there, right? So she helped me just how to pitch and how to use less science words in our pitches, which we're still working on to some extent. But then it was this balanced approach of taking in some venture money to really support the growth of the company, but balance with some of this non-dilutive funding for specific projects where it made sense and some of that was some of that in the early stage is validation, right? Having having funding through groups like NHGRI, having an early partnership with a company like Novo Nordisk, which provided also some non-dilutive funding for the company, really validated all of the science that we were doing because we were first time founders, because we're a little bit outside of the normal profile. For me, I don't feel weird being a female founder only because 80% of veterinarians are female. Like, I'm used to being in a room with all women. You go to a bio conference, it's not the same thing, right? So for us, we're just we are who we are. Right. But it's helpful, I think, to get some of that external validation and then really be able to use that to to start to build on programs and show progress.Ashley Zehnder: And then it becomes more about the data and the progress and what you can do with it. So that's a lot of how we started the company. There's I said there's a lot of support in the West Coast for this kind of thing. There's great programs like Berkeley Foreman Fund Talks, which I worked, which I was in as well, just about logistics around starting companies. There's a lot of good startup accelerators. I've got a really amazing all of us, how amazing a network of founders who we can reach out to on different. I got four or five different Slack channels of founders that I could reach out to for all kinds of advice. And usually it's always good to have a company that's one or two stages ahead of you, like talking to folks who IPO'd or something last year is is not as helpful as folks who recently raised a series B, right. And figuring out what those milestones look like and then particularly those that have taken mostly money from tech investors like we have all the lifeforce capital who led our last round is also has funded some very good therapeutics companies, Sonoma Therapeutics and Second Genome and other therapeutics companies as well. So I think it's it's helpful to see how people balance the needs of the companies at different stages in what you need.Harry Glorikian: But so do you guys think that you could have started Fauna ten years ago? I mean, did the support systems exist for starting a company like this?Ashley Zehnder: Well, no, for two reasons. We couldn't have started Fauna ten years ago. One is the data just simply wasn't in a place that the company was a tractable strategy. Everything was still too expensive and we had really shitty genomes for a few species at that point. And B, I think there really wasn't the kind of groundswell of support for deeply scientific technical founders to start their own companies and train them to be the kind of leaders they need to be to run those companies for a longer term. So I think it's a confluence of those things and being in an environment like Stanford that really encourages people to to try startups, it's not a crazy idea. Like people don't look at you like you're your heads backwards. If you start to start a company at Stanford, it's like, okay, cool. Like, when are you launching? You know.Harry Glorikian: I think it's the opposite.Ashley Zehnder: Yeah, exactly. Exactly. Like, why aren't you have a company yet? Whereas you know, a lot, many, many, many, many other places like that is seen as a very strange thing to do. So I think the environment plays a huge role. Yeah, for sure.Harry Glorikian: Yeah. I think between East Coast and West Coast too, there's.Ashley Zehnder: That's a whole, we should have a whole 'nother podcast on that.Harry Glorikian: Yeah. Yeah, exactly. Well, I live here and I was I was born and raised on the West and I remember there and I came here and I was like, Oh, this is where you are not in Kansas anymore. Like, this place is different. So, I mean, I'm hoping that the East Coast is actually embracing risk a little bit more and sort of stepping out on the edge. But it's really slow. They don't call it New England for nothing. So. But, you know, it was great having you both on the show. I this was great. I we covered a lot of ground. I'm sure people's heads are spinning, thinking about, you know, you know, different animal species and how that's going to play into this. And I mean. It really does sound like I know we have to do the hard work, but there's a lot of computational effort that has to go on here to sort of. Make sense of this and bring it all together and align it so that you can be looking at it properly and make the right decisions going forward.Ashley Zehnder: Yep. Millions of data points coming together to find drug targets for sure.Harry Glorikian: So thanks for being on the show. And you know, I wish you guys incredible luck.Ashley Zehnder: Thanks, Harry, so much. This was fun.Linda Goodman: Thanks for having us.Harry Glorikian: Thanks.Harry Glorikian: That's it for this week's episode. You can find a full transcript of this episode as well as the full archive of episodes of The Harry Glorikian Show and MoneyBall Medicine at our website. Just go to glorikian.com and click on the tab Podcasts.I'd like to thank our listeners for boosting The Harry Glorikian Show into the top three percent of global podcasts.If you want to be sure to get every new episode of the show automatically, be sure to open Apple Podcasts or your favorite podcast player and hit follow or subscribe. Don't forget to leave us a rating and review on Apple Podcasts. And we always love to hear from listeners on Twitter, where you can find me at hglorikian.Thanks for listening, stay healthy, and be sure to tune in two weeks from now for our next interview.

While current maps of the human genome provide researchers with a wealth of information, many argue that they do not adequately capture humanity's vast diversity.Now, a team are trying to build a more complete and representative map that shows the varieties of sequence that can be found in different populations. However, given the failings of other projects, some geneticists focused on the needs of Indigenous communities are wary of the initiative.This is an audio version of our Feature: A more-inclusive genome project aims to capture all of human diversity See acast.com/privacy for privacy and opt-out information.

Nature's Nootropic: https://trukava.com,use code DAVE15 to get 15% offApple Cider Vinegar Benefits: https://paleovalley.com/DAVE, use code DAVE to get 15% off your first orderFranchise Opportunity:https://ownanupgradelabs.com, to check out the fitness center of the futureIN THIS EPISODE OF THE HUMAN UPGRADE™...… you'll learn about the implications of synthetic biology in Part 1 of a special two-part episode.Andrew Hessel and Amy Webb recently authored, “The Genesis Machine: Our Quest to Rewrite Life in the Age of Synthetic Biology.” This Part 1 episode gets into the scientific perspective with Andrew. Part 2 on episode #914 explores the futurist perspective with Amy.Ask yourself, if you could edit your genes—to fix infertility, diabetes or even depression—would you do it? That's the premise, and the promise, of synthetic biology. And a reality you'll have to wrestle with. To make these decisions intelligently requires a deeper—and urgent—understanding of what's happening in science.Right now, scientists are rewriting the rules of our reality. They can use computers to gain access to the cells of any living organism and write new, potentially better, biological code. Andrew—a microbiologist and geneticist—works on the leading edge of genomics and bioinformatics. He's been immersed in the world of synthetic biology for years and joins the show to explain new advancements.As a scientist, communicator, and investor, he explores the future of biology and biotechnology. He co-founded the Center of Excellence for Engineering Biology and the Genome Project-write. The Genome Project-write is an international scientific effort that designs and builds large genomes, including the human genome. As we embrace that life no longer will be a game of chance, it will be the result of design, selection and choice, morechoices have to be made. Decisions like who gets to program life, create new life forms, and even bring former life back from extinction?“The Genesis Machine" is a book about science, but it's not written for scientists, Andrew says. “It's about some amazing people and stories and we've got some fun scenarios that help you think about where some of this stuff is going. But really, this is a technology that we're all building day by day.”See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

If you want to talk about crafting a career that emulates a drunken walk through science and explore the potential of backing up your biology like we back up computers for a reboot in the future, it's time to meet Andrew. On this episode of Titus Talks, we are super excited to sit down again with Andrew Hessel. Andrew is the co-founder and past-president of Humane Genomics - which engineers synthetic viruses to target cancer cells- and co-executive director of the Genome Project-write (GPW), an international research and development effort that lays the technical and societal foundations for responsible applications of synthetic biology. He was also an Autodesk Distinguished Researcher, where he was part of a multidisciplinary team exploring computer-aided design and manufacturing for biotechnology and nanotechnology R&D. Today Andrew shares about his newly-released book: The Genesis Machine: Our Quest to Rewrite Life in the Age of Synthetic Biology. We also discuss our shared passion for the operating system for life, the impending Cambrian explosion of biology, and the importance of looking at life as a non-zero-sum game. His advice for our listeners? If you are looking for mission-driven work, pay attention to the programming of life that makes synthetic biology really ignite at the intersection of biology, computation, and automation robotics. And it's time for humanity to be victorious over viruses. We hope you enjoy the conversation as much as we did!

Today, Andy dissects the CEO Genome Project - a 10-year study that assessed 17,000 C-suite executives and came up with four essential behaviors all of these leaders shared. Andy shifts the focus to share the emotional and relational barriers that can keep leaders from succeeding in these behaviors. In this episode, you'll learn:2 important questions to ask yourself in order to become a more decisive leaderWhat may be keeping you from being able to listen to the needs and feelings of othersStrategies to become mindful of everything that is draining your energy& much more!If success is about the elimination of what matters least in life, then we need to focus on the few behaviors that bring about the greatest return on our investment. Remember, wholeness is not about arriving somewhere, it's about pursuing a pathway that leads to life, joy, purpose, and intention.

“We're just at the cusp of the genetic therapeutics revolution, which I think will continue to sweep medicine for the next 15 to 20 years and will completely fundamentally change the way we think about treating all kinds of diseases.”  In this week's episode of The G Word #sciencepodcast, our CEO Chris Wigley is joined by Prof Sir John Bell, Regius Professor of Medicine at Oxford University. Prof Bell has been extensively involved in the development of research programmes in genomics and genetics as well in the development of a clinical research programme in the UK. He is the founder of the Wellcome Trust Centre for Human Genetics and is the founding director of three biotechnology start-up companies. As well as receiving a number of awards and honours, he has a number of charity positions and was selected to the Vaccine Taskforce in 2020. Prof Bell also assisted in the development of the 100,000 Genome Project at Genomics England. Today John talks about the new operating model - Our Future Health. As the leader of the programme, he discusses how it has the potential to transform the way people are treated in cancer. He also discusses how new technologies have improved genomics and how they have transformed our thinking around cancer.

In each episode of the Inside Our MIND podcast, we take a look at issues and challenges facing education that we are working to address through research, technology and strategic initiatives.In our latest episode, I welcome our Massachusetts Professional Learning Designer Elizabeth Birie to the show for a conversation about edtech implementation. Elizabeth reflects back on her firsthand experiences with edtech as a teacher, and some of the challenges educators face when implementing programs. We discuss how her experiences have informed the work Elizabeth has been doing at MIND, supporting teachers, schools, and students who are using our ST Math program.Over the past year, Elizabeth has also been lending her expertise to the EdTech Genome Project. Coordinated by the EdTech Evidence Exchange, the EdTech Genome project is "creating an evidence-based framework to help educators make better-informed decisions about which technologies to use in their classrooms and schools -- and how to implement them most effectively."The EdTech Evidence Exchange just published a report on the EdTech Genome Project, which you can download here: https://edtechevidence.org/wp-content/uploads/2021/07/1.-FINAL-EdTechGenomeProject-FinalReport_July2021-2.pdf.Topics Covered in the Podcast:0:00 - Overview and past history of content2:30 - Elizabeth's teaching experience and working with MIND6:00 - The importance of school and staff culture10:00 - EdTech Genome Project overview15: 30 - Defining staff culture for the project22:00 - Staff culture and the impact of COVID-1925:30 - Current status and next steps for the EdTech Genome Project27:15 - Bringing insights back to MINDThanks for listening to the podcast! Please leave us a review on iTunes, Google Play, Spreaker or wherever you are listening to the show. You can learn more about the EdTech Genome Project at https://edtechevidence.org/.

On today's update we have the latest coronavirus figures, the news that only vaccinated people can attend live events in UAE from June 6, and Emiratis are being urged to submit DNA samples for a genome project to tackle deadly diseases. Adnoc awards a $744m offshore field contract to NPCC, and protesters are killed in Baghdad as violence flares at anti-government rallies. Thoraya Abdullahi joins us for what's trending, including Cyclone Yaas, a helicopter crash in Florida, and South Korea's mask restrictions.

how are we going to see the patterns of the moment right now if we were being distracted and disoriented by patterns of the past and in so-called mental illness and psychosis and things we actually see that we're hallucinating maybe not at the exact moment but at a certain point where like wow that was big hallucination likely but people that are so-called normal still think the images in the ego that they're seeing is real so they're still delusional so I think this process of so-called psychosis and mania helps to heal the delusion of this attachment to images and not take the images so seriously and so to come back to regular ego consciousness and then and then take it seriously again is missing the point a little bit I think we can level up socially with perspective asst approaches so people with trans consciousness perspectives can actually help us level up socially because we can perceive these social fabric issues the worlds in recovery I don't even like the term recovery so i would like to transform that too rediscovery and recreation need to rediscover and recreate the world I think this trans consciousness and I think I talked about this before is a different line of intelligence intelligence we all have access to its not a mystery it's just a line that we haven't developed and it's one that when it starts to develop and it could be part of the evolution of consciousness it's somewhat misunderstood because we take the ego and consistency to be what a person is that would be like having a clarinet and just playing the cenote all the time we have full range of tunes and melodies that we can play through our body consciousness instrument but we just play the same old one all the time and that makes other people comfortable apparently but as soon as we're like wow there's so much more I can do with this body in the structure and in this universe that I'm in and a part of then it's seen as illness basically for stepping out of line and in society we have lineups for for the bank and lineups for food and lineups lineups lamps we don't even know we have all these individual lineups in our own inner realm of the rules of society and a lot of them are completely necessary but some of them prevent us from actually fully expressing all the ways that we are and allowing that to come out and through us and playing our full range of notes if we identify with our ego self it's like having somebody with the most beautiful voice sing the same note all the time well each one of us is a beautiful human being and we're playing our same ego programs all the time we've lost those degrees of freedom it's like we have invisible straight jackets on I'm part of sharing context and making new memes and meaning is just validating my own experience and hopefully validating some of yours and hopefully you can validate some of yours with yourself and part of the validation is sort of like okay you're still human it's okay and I actually feel like it's beyond okay because it's about making new meaning and memes so it's not just about oh it's okay you're still human it's actually you're becoming more fully human people that are diagnosed with bipolar disorder are said to have a mood disorder because they're up and they're down all over the place they're actually more just responding fully in the moment and maybe it seems a bit extreme because everyone else is so dulled out and I'm not saying it's necessarily good but if a person was allowed to be that way for a certain period of time they would probably naturally start to calm down as they got used to perceiving certain things so they would eventually even out somewhat but a person like that might be my benefit from someone who can sort of coach them through it instead of say your your dysfunctional or you're just near defective in a way and I guess that's kind of what Tom Wooten's doing he's helping people keep their cool and that's a very good thing if I did a campaign on stigma it would be screw stigma because this trans consciousness is awesome takes a lot of practice to operate trans consciousness as opposed to ego consciousness just like it would take a lot of practice to ride a hundred foot wave it takes a lot of practice to ride the wave of the universe while jumping over the puddles of the society we've created and that's the part I like to talk about with this contextualization is that we have so much capacity within us they talk about flow and how people are five hundred percent more productive well manias like extreme flow and people in those states I feel maybe are ten thousand percent more productive and maybe there are ten thousand percent were productive for 30 days and then they are crap either and then after that they're non-functional well that's why it's for me important to go back and harvest those 30 days of ten thousand percent productivity because those might be the products of one's life of one's creations that inform the rest of one's life so we might have harvested everything in a very short period of time where some people create consistently over time maybe some people are quite productive in 925 work and there's nothing wrong with that either but not everybody is the same not everybody fits into that box and I don't feel that people that have a certain type of consciousness that unfolds something and create something in like a very short powerful period of time I feel people that have that need to be supported to harvest Romania and work towards what it was that they were here the vision they were here to unfold the one that they gave birth to the one that they cast and and that is their creation so if they take five years before they get back to even looking at harvesting their mania so what support that person because whatever it is that they were a seed of is something powerful and wonderful and for the world person doesn't go through that kind of hell for no reason for just personal gain that's the thing we're not functional producers as human beings some of us produce everything in one month and then can't get to making it available in a way that is recognized for a long period of time and then other people love the nine to five other people love shift work other people loved working for themselves a lot of people don't love what they do and that's what I feel is some of the people that go into manic consciousness some of the visions they're here to unfold and co-create likely with each other is something that will help the people that are in those states and places where they're doing things that they're really not happy with so we could possibly create some of the structures of happiness some of like the adult child playfulness stuff that will help people reconnect with that so the people at flow Genome Project have the flow dojo and have people in contraptions to try and get them into flow well what if there was contraptions everywhere in society that would just make people playful and creative and learn and have fun and happy and then they would just be learning which is a creative state instead of all these meaningless things and then we try to get some sort of work or meaning out of it it's all really backwards because in mania we go into that extreme ecstasy and joy and we see it everywhere and it is everywhere and in that way we see the pattern of how to create that and you can bring that back for people because we all want to go back there together I wrote down why aren't we making these amazing bio chemicals within our inner pharmacy as human beings and I think a lot of it is to do with the ego and how divides us and judges us and keeps us separated if we were in oxytocin consciousness we would be bonded and collaborating and cooperating and we wouldn't feel this heaviness we wouldn't feel alone we wouldn't feel fearful we wouldn't feel all these things I feel like mania is the epigenetics it's that energy which has changes the epigenetic expression which would change the bio chemicals that are made within us the endogenous thing and I feel it changes towards tryptamines and oxytocin as well it shows us exactly how we need to be in order for that to be created within ourselves and the interesting part about it is that it's not a dopamine reward so if I'm just doing that for my own pleasure then it's not going to work it's not going to put me into that state it has to be for the collective humanity which is oxytocin because that energy is to be made relational in the collective humanity and because we are the context of that relational state mania is the opposite of psychosis and all the different factors and aspects and traits and experiences in mania are sort of those pieces that need to be added to society not in that way i feel like people that go into manic consciousness are social change agents we downloaded that vision we harvest but we didn't harvest the vision we didn't make it relational we instead decided to accept the story that were just ill and then it was delusion anything a manic would do there's this like mannequin thing happening right now in the internet I haven't seen any of it but i was thinking manic kin as an MA n IC dash ki n which where the mannequin were sort of the kin of mania we've been born from that consciousness and I think of it as sort of a rebirth and the ego is sort of a disguise of this energy of the celebration and there's psychedelic research going on I think it reduces allostatic load and maybe wipes the slate clean of a quark sensation somehow it's like channeling all that energy through it and process it I wonder if the if the psychedelic causes epigenetic changes towards oxytocin and safety and that heals that it heals ones relationship with the universe in that fabric that we're immersed in as the universe and we then again feel the universe as a safe place and I posed the question before is this a playful universe and I think it's up to us to gesture that into reality and I just thought about how gesture or gesture or something as a clown so gesture that into reality is this playful REE universe well we as human beings are the answer to that it's almost like if a person makes a playful gesture the other person has to be paying attention has to recognize the pattern of play which is something we can often most often recognized and so when they recognize that they're actually perceiving in the moment they're not seeing their ego and that brings them into the moment and then elves and they're related to you through Play and then in that way now they're in the moment and their relational and it's a social thing so there's some oxytocin so just by being a little bit playful and silly it can change the social fabric what I give my attention to is the epigenetics so my attention is the light of my consciousness and that's my perception and what I perceive is going to be imprinted on my inner light body mind screen and that pattern is what's going to cause the epigenetic changes because the pattern recognition is what changes my physiology and so I can recognize something based on my ego pass or I can recognize something based on how we are designed as human beings so there's different type of recognition that's not of the past Eagle personality self it's just of Howard designed as human beings how our nervous systems are actually designed to respond through Play and laughter and these things that we come here as children with I'm wondering with kids it's it's almost like we allow them to play until they're say age five or six and then a certain percentage them and their life maybe if we let them play a little bit longer they would just have a bit more context in which to have that immunity to their own ego that it is going to develop so what I give my attention to is the epigenetics or creates the epigenetic change and so if I give my attention to play I'm going to be creating play I'm going to be saying yes this is a playful universe because i am the universe and i'm being playful and so are these other universes we're all overlapping universes where all each we all each have all of this and I was saying to someone once we share every single bit of this except for our bodies really so we're mostly all the same and we're all a part of this guy is fear perception is epigenetics I was thinking about how many of us who go into matic consciousness feel like we need to save the world well what we record or what we perceive is sort of what ripples out as us as the world and so we save the world by what we record as reality even with the ego memories that we save and record in our bodies and minds that's what we're saving as the world we're saving all these garbage bits and then we go around with these garbage bits and perceive the world and just as this sort of miserable person are just recreating this misery and creating and and contributing to co-creating that and we don't see that's what we're doing I think this manic consciousness is in Morfa genetic field that not many of us can tap into it just like trauma gives us the trauma lens mania gives us the adult child like lens and when one has both one has a very large spectrum of context from which one can understand and perceive the world and it makes it more difficult as well because there's more information to take in feel like people that lose their ego can actually really see they lose function but they gain vision and it's like seeing so clearly that one stumbles in reality constantly because one can see all the subtleties whereas if one's blind to those things it's easy to just keep walking straight ahead when one has vision and access to peripheral vision one can't help but looking around and seeing what's going on all around and one one does that one might actually turn and go off there straight and narrow path that their ego would otherwise direct them down I feel like we need to forgive ourselves for taking on the story that society's given us relating to mental health because that creates stigma then they say well it's not your fault no it's not our fault it's the co-creation of society and the people that have these experiences can see this trauma of society and then it's made into a personal problem society is destroying people's brains and in manic consciousness we connect to those inner human dimensions and it's part of our role to unfold this into the social fabric and make it relational be positive social contagion spontaneous social behaviors pattern interrupt heart resonance I talked about 12 steps to mastering your visionary intelligence and it could even be mastering your trans consciousness and the first one is you are the power or not you are powerless and the second step is trauma-informed lifestyle reducing allostatic load trauma release exercise emotional CPR safety plan wrap crisis plan representation agreement advance directive zap straps create keeping oneself safe from suicide and there's a step about the human dimensions getting in touch with those as opposed to an unfolding based on those not unfolding once life based on one's ego image false constructs and another step is about the mirror neurons spontaneous social behaviors random acts of kindness and it's about what skills and assets do we need how do we need to practice embodying are mania in order to create epigenetic changes in others and I think part of it is being playful which could be disturber in chief that's the thing if this isn't made really fun then it's not going to be that interesting so what are your skills and assets that are your joys these inner human dimensions replace time our experience of time is the ego and when these internet human dimensions are there there is no time really and actually I just realized that that's likely why we have trouble falling asleep because the ego is the habit of okay well now it's time to go to bed and then we go to sleep based on habit when all these habits are broken not only do we have more energy from not having these habits we're adjusting to we don't have that inner ego I think that ego creates inner space and time which is an illusion of being congruent to outer space in time outer space and time is actually more congruent to the inner human dimensions which are Beauty truth love playfulness it's more congruent to that and just because things unfold in chronological time which we actually keep track of with a clock we we think that there's an inner equivalent so not that one doesn't need to sleep people do need to sleep I'm just thinking that maybe because the ego was scrambled that also scrambles our body clock or biorhythm of clock time because we're on a different viral rhythm of that human inner human dimension which gives us access to a lot of energy and we don't need to sleep as much and that could just be actually part of how the universe is trying to vision cast through us and seed something through us that we can go back and harvest later and unfold in clock time slowly over time but it works overtime in that period of of altered consciousness in order to actually bring it all into play for the next part of a person's journey I had a weird thought that they say I've read that there's a belief that people create their life and sort of a dream dimension before they come here on earth and maybe there's like a hundred years to do that or twenty years or something like that and I was just thinking about how it'd be interesting it's just an interesting thought that since there's way more people on the planet there's less beings in this dream dimension pre creating their next life so they have to come here to the planet prematurely so perhaps we're actually all being birthd here prematurely and we're not fully able to integrate the vision we have for our life and live it out so then we have all this distortion and so called delusion and hallucination and go into these other states of consciousness which reconnect us with that dream dimension or maybe we do come here with that full dream dimension but we go into that other consciousness to experience it again while we're living because the planet really really needs people to be in co-creation and Club and collaboration with each other at this time so we get we get like bonus dream time because we have to see this because there's more and more of us on the planet and then interestingly enough now a lot of kids are being born and developing autism where it's a different way of that that dream happening this is unfolding meaning in self dialogue I've heard of open dialogue but they don't have open dialogue here so I'm doing self dialogue there's an importance in mending the social fabric with emotional CPR but also with people who want to be chief disturbers a lot of us are traumatized and then we get so called mental illness and Timmy it's that gesture it's that action towards another that harmed them in such a way that felt traumatic and then eventually the allostatic load accumulates and they develop mental illness well is it something wrong with their brain or was their brain scarred and traumatized by the actions of somebody else the gestures of somebody else and in that way with different gestures we can actually work towards healing that so the disordered action of people being violent and things actually is creating so-called brain disorders and other people I was thinking about this company as it's more than a company it's about people as company as accompanying other people as each person is company to another so it's a company about company and it's about how are you contagious we need to go from the limited ego to the worldcentric we go it's not about personal growth that is a mental illness it's about we go growth I also feel like wouldn't take that much money to really work with somebody to facilitate them to really thrive and no longer rely on the system in ways and again there's the label so I could say to people I have bipolar disorder or I could talk for a hundred hours on video about the richness of that experience and that continued experience I also feel it's important to invest in human brains if a brain can be restored to learning it will be self fulfilling and interdependent and save a lot of money as well as social costs of somebody not participating in reality but it's also not just participating in the cog in the machine reality but co-creating the life that a person came here to live Get bonus content on PatreonSupport this show http://supporter.acast.com/bipolar_inquiry. 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I'm feeling super flowy so i think i'm going to go back to talking about my own interpretation of flow as possibly an equivalent to the experience of mania now before you jump to conclusions about what i just said i have a lot of explaining to do and it's not really a linear correlation it's not exactly the same but i feel like there's a lot of congruence ease and i was listening again to a talk by Steven Kotler I think I said that right this time and everything he talks about when he's talking about flow if I would replace the word mania it's a similar experience to me so Steven Kotler has never been in an experience of mania so he wouldn't necessarily have the same realization that it's a very similar state and if it's not a similar state at least has a lot of similar underlying principles and properties so he hasn't been in the manic state to know when he's listening to himself that he's talking about something when he's talking about flow he's really also talking about the experience of mania he talks about how flow is a spectrum he talks about how there's five neurotransmitters or neural chemicals that are our part of the flow state that we make inside our brains and bodies and and he said sometimes we have partial flow states where some of the neuro chemicals or neurotransmitters of flow some of the five are present but not all of them so I'm thinking to myself that mania is somewhere on that spectrum and it could even be an experience that is hyper flow like even beyond the regular flow experience or it could be maybe having some of those neurotransmitters but not all of them and of course there would have to be some kind of studies to actually confirm the neurobiology and neurophysiology and neural electricity of people that are in mania but good luck finding them to study them because when they're in that state of flow they're just flowing with the universe and not really one to want to be subjects of study and usually a person is treated after the fact after the mania turns into something else and person is then intervened with in some way and stephen also talks about how his flow state that he experienced healed him of Lyme's disease that he was debilitated for by for three years and in my mind if you think flow States heal it's possible that manic States heal and a lot of people that go into these states have maybe a history of trauma or they went traveling or they can't sleep or some people maybe fasted all these things can put a person into that manic state and in my mind if I'm going to keep with the theme that mania is equivalent to flow in a lot of ways it's possible that the manic state is a healing state in my experience I had some trauma happen before I experienced mania a couple of months before and I was having a hard time with it and then all of a sudden my being went into a state of complete ecstasy and wonderment for over a month and if I think about how I was basically struggling with in my psyche all of a sudden my psyche was blown apart my ego disappeared and I was just in a state of childlike wonder play creativity flow for over a month that could possibly have been a healing mechanism that could possibly have been almost like I was in so much pain and suffering that my my psyche went into that state in order to sort of overcompensate for the suffering I've had for a number of months and that's just a theory but to me I'm just comparing how his flow state healed him and I think that there's some healing that happens in the manic state and again I'm not glorifying mania but at the same time there's a lot of positivity in it and it usually doesn't it usually doesn't end up positive in the end people usually crash in some way and there's a number of thoughts about why that might be so for one a person's not used to operating without one's ego and in mania it's not operate it's not operating a person's not operating from their regular consciousness where they're stuck in the repetitive story that keeps him grounded in daily reality and Jamie wheel talks about this as you know the inner critic and and the sort of going towards pleasure and avoiding pain mechanism that were usually operating in and he talks about kind of stepping outside of that and mania is definitely stepping outside of that and so what persons not used to operating in that mode at least we haven't operated that way since childhood and another reason too is that the world is not structured based on the principles that one experiences in say a manic flow state so eventually a person kind of bumps into incongruencies in reality enough to bring them kind of back now also a person's are not practiced in actually experiencing this flow state of consciousness which is a lack of personal ego for a lot of it and actually one of the things I thought of was there's a lot of it that's lack of personal ego but the trouble is that when interacting with people that one actually already knows one does have to kind of bring the ego back in to interact with those people because it's that's how we have been interacting with those people our entire life and that gets kind of garbled in with the flow stayed you know so he Steven Kotler talks about surfing and how he went surfing and that was his flow state while he knew how to surf so had he not been able to surf he probably wouldn't have gotten up to surf and he wouldn't have gotten into a flow state and it would have had no healing effect now a person that first goes into the manic consciousness they've never experienced it so it's like trying to ride a 100-foot wave on a surfboard when you've never done it before it's going to be very difficult and you know another thing too as with the ego getting confused in with the flow situation by interacting with you know say family and friends that one already knows that's like trying to ride the 100-foot wave while getting sprayed in the face with a fire hose it's just really difficult and confusing you're trying to even ride this wave but yet there's this other stream of water hitting you in the face so I feel that this manic consciousness actually takes practice to ride that wave and be in flow with that wave and not be sprayed in the face by a fire hose at the same time and then even if somebody even if somebody is in manic consciousness and they're kind of writing that 100-foot wave if you don't know how to ride the wave even if you get up on the wave you're probably going to crash at the bottom and that's sort of the equivalent to depression in a way so person if they're in the flow state riding the wave on a surfboard literally but they get sprayed in the face with a hose they're probably going to crash at the bottom of the wave and even though they were in flow they're going to have some kind of injury at the bottom so people so those sort of disturbances in the manic consciousness flow state which are like disturbances from society which society is a disturbance it's not designed for flow at all and then we wonder then we're sitting here thinking how do i get into flow when society is not designed for flow at all and they talk about transient hypo-frontality in the flow state the whole society is based on the prefrontal cortex and thinking and and cognition and deciding and and our own personal stories that we repeat in our head and as soon as we get into that story making consciousness we are thinking in terms of past present and future and as soon as we're thinking in terms of past present future we're not in the moment and if we're not in the moment we're not going to be in flow so to me a lot of the thinking about flow is actually perhaps preventing flow because it's thinking itself it's cognition itself that is actually in the way of flow and even all the scientific studies in the world about flow are still cognition about flow and they talk about how the state of flow is actually to be in a pre cognitive state sort of before the thinking and they think basically that we make decisions before we're consciously aware of the decision but in the flow there's nobody there to make a decision the one that makes the decision is an ego thinking that it's making a decision choosing between one abstraction and another the actual happening of the thing is not an abstraction that would be like saying that you know I could hold up my birth certificate and say hey I was born this proves i was born in this piece of paper but i'm sitting right here which proves i was born i'm i'm here i'm a physical human being so in a way to say that we need thought choosing between something making a decision i do we need decision to move most of our movements are not a decision if I'm speaking I'm not actually thinking I'm deciding to move my mouth in this way it's just happening and then we have this tiny little bit of our brain devoted to this supposed decision making process choosing between two thoughts and we think that the choosing between the two thoughts is what actually make something happen but it's actually the thing happens first and then the thoughts come and the choosing process after and then we think that we actually chose something and it's actually an it's like an optical illusion and it's probably one that we need because if all of a sudden we think oh we don't have free will then we would go a little bit batty but the thing is that when we realize that we don't need free will or something they're choosing to move ninety-nine point nine nine percent of our information and and stuff happening is just happening beyond conscious choice and we have this conscious choice that isn't even our own conscious choice it's programmed into us through our education in our family and it's passed down through generations and the memes are passed down through generations and then we think we're actually choosing something but we're just choosing between one illusion and another so if we're thinking about something like our past then we think oh that's bad I don't want to think that we choose something else we're thinking about the past which isn't happening now so we're not actually in the present moment so we're actually creating this time in our psyche which doesn't actually exist and then we spent all this time kind of wondering about it and stuff and then craving it not being there and then doing things by thinking about them in order for them not to be there but that same thinking is the same as the thinking that you don't want so trying to do anything about any of it is actually just strengthening it so if I'm even to think I really want to have a flow experience I need more flow how am I going to get flow the I the ego is the barrier to flow so the I ego trying to seek flow is actually avoiding flow by seeking it so it's really it's really messed up actually but once you actually see how it works if you really consider how that whole mechanism works and once you see how it works you just kind of kind of just watch it in a detached way and Jamie will talked about instead of having our awareness taken up by that sort of story mechanism of past present future about our own little history and problems and pleasure seeking and desire it's sort of a switchboard monitoring our whole organism or a dashboard he said and he didn't elaborate on that in the talk that I was watching but in a way it would be like oh like just being aware of my posture being aware of my thoughts but not trying to think my way out of the thoughts or think different thoughts or choose different thoughts and what they're talking about to and I don't know if they've studied J Krishnamurti but it's a lot of the same sort of thing in a way Krishnamurti talks a lot about thought itself as the problem not thinking better thoughts not trying to become better psychologically because all the psychological thoughts are just the same so if I think a thought he says the thinker is the thought and it took me a long time to really grasp that even though my thinking process has changed over the years to one of linear association of past present future my own personal story too i would say thoughts that arise that are more to do with the perception in the moment or you know something I need to do something I need to do isn't mixed in with oh this happened yesterday and I am this and I am that and oh I forgot my keys it's silent silent silent and nothing nothing nothing oh I forgot my keys so it just it still happens that's the thing it doesn't need to be going on all the time all this stuff in the prefrontal cortex in order for the brain to work efficiently it something else happens and it's it's it's similar but it's still very different and they talk about in flow the prefrontal cortex actually pretty much shuts down and they said they were surprised by this because we think that more brain activity actually equates to more potential or more human potential and and they're finding oh it actually shuts off and that's the part where there's the inner critic and all these things that inner critic is actually in the way of flow and the prefrontal cortex is kind of everything we've gotten from society all the programming all the conditioning all this inner critic stuff and it has nothing to do with the exact moment now so it's kind of an avoidance strategy and I talked in another video about recently I've made the correlation between mania and learning and I really think this inner critic circular thinking about not much of anything actually blocks learning how can we learn when that stuff is going on we're not really learning anything and society thinks learning is actually memorizing stuff that's not learning at all and the more we memorize it actually kind of clogs up our brain and we're actually designed to learn through play and I feel that mania is synonymous with play and creativity and flow and energy and I think this thinking process that we call like cognition is actually zapping our energy and and I had this thought too because in the in their research that they're doing for the flow Genome Project they're kind of interested in things that help bring someone in to flow in terms of physical stuff so they talked about multiple G's of gravity and something about spending people around and something else and I'm just wondering if I have a curiosity about something to do with one's own personal center of gravity so these they talk about the extreme elite adventure sport athletes and how they're able to get in flow and they've used that idea as a way to hopefully get other people into flow by making it safe for them to get their body into those extreme experiences and it's interesting because these people who these people who are the extreme adventure sport athletes their body is kind of like one with gravity in a way meaning that their center of gravity is sort of in line with the universe's gravity so if somebody is jumping out of a plane or surfing they have to know exactly how to rotate their body and move about their own center of gravity in order to do that so they've become masters of their own center of gravity and that's just my own thought and when we think of and when we think about it the people who are in those moments they're not going to be thinking about what's for dinner tomorrow when they're writing a 100-foot wave and that's the whole ego goes away and they feel flow so they need to they go about putting their body in those extreme situations in order to get into flow that takes a lot a lot a lot a lot of training in order to learn how to ride a 100-foot wave in order to do that and their body the wave is actually mapped their body the gravity of all the waves that they've ridden and their body is actually perfectly adapted to that activity which then gives them the flow experience now do we all have to be able to ride 100 foot waves in order to get our egos to shut up I don't think so and it's interesting because I actually feel that a person probably each person in a way has like a unique center of gravity everybody's would be a little bit different how they carry themselves how they walk how they talk their body shape their muscle capacity their their body composition so everybody's is a little bit different and now a child kind of has a naturally perfect center of gravity as they're growing but then as we go about life and we're contorted by the rules of society by sitting in a desk for six hours a day for 20 years or more and all these different things that are against the nature of the center of gravity of human beings so if a person developed naturally whatever that means we probably don't even know what that means because society doesn't allow for that I could imagine their center of gravity would be they would carry themselves in their own unique perfect way that was perfectly designed for how they were born and and they would they would be in their flow if they developed naturally I feel like we're born in flow we're not born with egos thinking about what happened last week that is a societal thing so for me to all this hoop law is like well why do we why don't we question why we we train kids out of flow in the first place like it's like why do we do that and I think mania is one of those compensation mechanisms it's like an elastic band you know we're held down from our natural progression of our center of gravity throughout life and then all of a sudden something releases and we spring into this manic consciousness not because it's some kind of mental illness it's actually our natural state I just feels weird and it's hard to navigate and it's hard to operate because we were conditioned out of being that way but I think with practice we can actually learn how to master that energy we're designed to be so full of energy and not wasting it through of our own ego thought processes and then wondering why we're not in flow when we're thinking about last year last year is not flow the universe is now and so if our center of gravity in my little theory that I'm making up right now was exactly how we are and I talked about in a previous video how manic being in the manic state is sort of like being in your adult child state that you would be in the energy if you would have never been moved from the natural trajectory of your of your growth as your natural growth as yourself now the ego thing things happen blocked your energy blocks your energy blocks or energy blocks your energy so something happens the ego structure sort of falls apart and you spring into mania like whoa and there's and there's all this energy because energy is not being wasted and all those things that were conditioned into doing internally that waste all our energy and when the manic consciousness energy comes in we're not wasting the energy in that way so it feels super energetic but to me that's actually our natural state I'm saying with this whole center of gravity thing as different things happen throughout life you know education sitting in a desk you know not being allowed to be who you are your family saying you should be this in life when you feel you're called to do this and you're like operating it not really as height of the level as you are designed to be as your own unique self you know maximizing the complexity of the universe which is mathematically supposed to happen but we we defy the mathematics of the universe by putting all these false constructs on a person so their tents they're thinking they're deciding if you're just you what is there to decide about like oh should I be me or should I be me you're just you're just happening to be yourself so I feel mad at consciousness is actually the flow of the universe it's a correction it's a universal correction mechanism it shows us how we are naturally and that's the thing they talk about two they talk about oh we're stronger and flow we're more coordinated were more this one more that in mania I'm stronger I'm taller I'm more flexible I more agile all of those things and it's just a click it's not oh I have to practice so it's a natural state that we have within ourselves and it's more natural than what we think of as our daily life as natural because those are conditioned habits and programs we've just been programmed like like computers and we're more like reflex reaction mechanisms than actually seeing and living in the moment so another thing at the center of gravity this is something I made up today and it goes along with my thought before about how the manic state is like our adult child version of ourselves as if it had never been contorted or adjusted by the rules of society like that you should do this you should do that you should be this you your parents expectations studying like crap mostly as part of education in the formative years and so are all these things all these things that we turn away from or that make us contract they actually contort us they they're stored in our muscles and over time we get hunched and and we start walking lopsided and all of a sudden we're older and like this and we don't even know it and to me what I'm saying is that is a messed up center of gravity of oneself and it's like all the different constellations of memories and thoughts and things are actually stored in our physiology and when the mania energy comes in it blasts all that apart and all of a sudden a person's like I'm taller I'm an inch taller because I'm no longer holding myself and and contracting my muscles and compressing the discs in my spine which messes up the energy signals going up through the spinal column and the whole body energy field and and our center of gravity is different in the field of gravity so if our center of gravity is all tense and contorted in the field of gravity to me right there that if you compare the analogy of how a person who has perfected their physiology in there there the whole structure to effortlessly ride a hundred foot wave now think about daily life is like a million foot wave like this is our actual life now why don't we riding that wave in flow why don't to me a person could be in flow kind of all the time for one struck society is not structured for that for two I don't think our bodies are structured for that so if they're using like neurophysiology neural electricity neuroanatomy and then you know the structure of the body and the force of gravity on the body as sort of like well this is going to get a person in flow we're always in the field of gravity and we have a center of gravity and if we're not in our bodies the way they're actually designed to be there's books on this and I have some because I was i did some sessions of Rolfing which is a structural integration process and it's like a 10 session 10 sessions of treatment that actually you know sort of unlock your body so you can move again and I remember I went for one session because I was like I don't want to commit to ten sessions I just do like a general one session and I I could reach behind my arms like this and like grab this way but I couldn't do it this way at all like I couldn't even get close to touching was probably like this far away so I said you know fix my shoulder or fix whatever's going on here and after that one session I can't do it quite as well but I can touch and before I couldn't even get close so I was like okay I'm going to do the 10 sessions and I think it was really important and I'll probably like 10 sessions are supposed to be good enough for life but i'll probably go up for go in for a tune up at some point but again that's sort of like correcting my center of gravity it's correcting a lot more than just that but what I'm trying to illustrate here is the way that they're really curious about how people in extreme sports basically that accentuate the field of gravity or accentuate the body's experience of the field of gravity get people in flow and I'm trying to compare that to how in daily life if we're lumped over sacks of it's going to be a lot harder to get in flow because our center of gravity within the field of gravity is not the way it was designed to be and and you can look at say indigenous tribes in the world where things haven't really been altered as much you know those different I'm not sure about culture is very well but they'll have the same body shape because they're all adapted perfectly to hunting and gathering and and their tribal activities and their communal so they share everything and they don't take more than they need and and they all have these beautiful bodies that are perfectly adapted to what the way they live and now our bodies are adapted to our numbed out junk food eating TV watching pleasure-seeking pain avoiding as Jamie wheel talks about and you know that's not a secret we're perfectly adapted to that and then from that sack of point of view we say why can't I get in flow and you can still get in flow as a sack of but it's just more difficult and what I'm trying to illustrate I don't think is necessary to have like a perfect center of gravity per se I'm just curious if that would help like I've also taken a course called body awakening method and the lady who taught the course she taught this like exercises you do on a chair to strengthen your psoas muscle and she also talks about how you're supposed to walk and how you're supposed to keep your feet straight when you're standing not like this not like this and not like walking like this or like this people think this is normal and I actually went to her talk probably like six or seven years ago and it was like an introductory talk and she told me about the feed straight thing and she told everyone and I actually walked like this one was like this and this one was like this and I'd walk like this and then kind of like dragged this foot and ever since that talk i was like wow I'm going to correct that I'm going to walk with my feet straight and it didn't take long and I and then I started to walk with my feet straight and she explained how if you're not walking properly that's putting pressure on your knees and then that's putting pressure on your hips and all of a sudden you're 45 and you need a hip replacement you're wondering why well we're not utilizing our bodies the way they're actually designed to be and she taught other tips too so between the body awakening method the soul as exercise and also the role thing I've done a fair share of and being consciously aware of my posture done a fair share of like structural integration and so for me it's not just about putting somebody in some kind of gyrating machine to see if they can get in a flow state like what we could put everybody in a gyrating machine right now and what's what good is that going to do you can't really get anything done during that that experience you know you might to me it's more if you're doing that it's more like oh I had a flow experience and then you add that to your little memory of thoughts for your ego mind to think of and dwell upon part of the flow thing is not to dwell upon it it's not really an experience it's you know Krishnamurti talks about how it's not an experience because the experiencer is the ego and if the experiencer is there abstracting then it's not that and if it's not so as soon as the experiencer comes back in and starts thinking about that that just happened you now made that flow a part of the system of thought as sort of oh I want that again which is pleasure and desire which actually gets in the way of it happening again so it's more it happens and like move on and that happens with people in mania to they're like well that was so wonderful and amazing and so it's such a great feeling but it's not really it's not really about personal pleasure until we make it about that in retrospect which is thinking about it and I think that's another secret of this flow thing too that they may or may not be aware of is that flow is not personal it's a state where the ego is absent so that means none of the egos shenanigans can really be accomplished while in that state it's that much maybe some could but ego shenanigans stuff is for personal gain and that flow state is sort of being one with the universe where there's no such thing as personal gain so the people in those extreme athletes they get away with it because they're kind of like okay I'm going to sort of check out of society and do my own thing i'm outside of society which society blocks flow for sure and i'm just going to do my own thing which it's sort of its personally wonderful to be in that flow but it's not it's not really going to do any harm to anybody right so they can kind of just mind their own business right now if a person wants to use flow for their own personal gain or some kind of evil thing is is that evil is thought evil is the ego and now the evil ego wants to get into flow which is a negation of the ego so in my mind one of the ways to get into flow if you want to think about how to is to move towards what it is that you would like to do or participate with that has nothing to do with your own personal gain because that state is not a state of personal game and I feel like if a person has that state and uses it for personal gain in the flow and then turns it into like this memory of like oh that was good i need to get that flow again to get that personal gain because maybe the first time they use it for personal gain it's going to block it from ever happening again because it's actually a gift from the universe to be one with the universe it's not really a gift it's our natural state and it's not our natural state to be these egos competing with each other killing each other comparing eat with each other and all these things that are just totally acceptable in society in society which is not flow and then anyways yeah and that happens in mania where people feel like oh this is all about me and and it can it's hard to not get to that place because it feels like everything is one everything's the same everything's one process there is no separation so at some point if the ego kind of sneaks in a bit it thinks while that means it's all about me but it's just this really wonderful oneness experience and it's not an experience because oneness is the way it is it's our ego mind that thinks it's different that blogs that it interprets things that turn things into concepts and abstractions the feeling of hunger is not an abstraction I don't have to think I am hungry to know that I'm hungry but since we always think I'm hungry when we're hungry we think we have to think I'm hungry to know that we're hungry and to actually go get some food but it's not really that way and it's the same with any other thought and it could be seen as really obvious in that we happen to get a lot of things done even though we're thinking about something else so just in that it kind of proves that we don't need to think about stuff in order to do it because when we're doing something we're usually thinking about something else that has nothing to do with it so just a matter of seeing well this has nothing to do with anything that I'm doing and maybe it'll just go away and then lo and behold were in flow most of the time so that's the comparison of the center of gravity thought that I have about our poor contorted bodies and I recently came across this thing called trauma release experience or something I camera tre and I I saw it before but I never really looked into it and so today I actually tried it for the first time this really weird thing if you google it and you see the videos people start kind of shaking and stuff and I was laying there shaking and I listened to an interview by Mary Shriver she talked about how trauma is a memory problem and how this stress sort of releases it from our hippocampus and I did read from dr. Daniel Siegel that during traumatic experiences our hippocampus shuts down and we don't really encode the memories of what's happening properly and and so those memories are sort of scattered in the brain and they can be recalled and they lack echforic sensation which means they lack the feeling that they're coming from the so then we feel like they're happening now and so when Mary shriver's head trauma has a memory problem that made me realize that's kind of a dr. Daniel Siegel saying and I did talk about in another video my own little theory about how if the hippocampus is being is shut shut down and the brains not sort of putting the memories where they're supposed to go well where does that energy go and I think it's still encoded in the heart and the heart has memory too we already know that from people with heart transplants I think some of it gets encoded in the heart and the hearts more about like electromagnetism and patterns being stored and I think maybe if it's blocked from this hippocampus putting in the brain properly it just gets stored throughout our entire body you know like if we're being traumatized maybe we're not even aware we don't even like say we're unconscious or something our heart is still beating and it's beating with fear and that is electro magnetism and it's it's it's reap a turning every cell in our entire body with that energy and so I think that this trauma release something whatever it's called is supposed to release it from the body and i'll probably be experimenting with trying it a few more times because because everybody has some stuff stored and what i'm thinking too is that releasing it from my body is releasing it from the cells and the muscles and everything which is going to do that whole changing my center of gravity to you know me carrying myself as i meant to be carried which means my center of gravity in my body in my pattern is moving through the pattern of the entire reality the entire universe you know the quantum hologram it's moving through as it as it was meant to not as things happened and and thoughts and memories got stored in me and and contorted my structure so I find that really interesting about that and so I've tried rule thing I've tried the body awakening method stuff both are awesome and now I'm going to be trying this trauma release exercise thing and and that's the thing that Steven Kotler talked about was and Jamie wheel as well as that we go into things through like the psychology and stuff and try and like talk it out and everything and they say that the precognition stuff is much more powerful so talk therapies like cognition cognitive stuff the precognition stuff they think is more powerful and so they're saying flow is like a pre cognitive state and to me that just means stuff is happening without thought going on and abstracting and conceptualizing about it is just really just happening and so they're saying by going through like the portal of like the body sort of a lot more can be accomplished and this TRE seems to be that too and actually the Lady Mary Shriver talked about that she said it you can't really talk it out it's it's stored in the body and so that's how it's apparently valuable so i bought the tre app and i'm going to be giving it a try and so in the morning i do something I learned from body awakening method called bedroom yoga and then I do a little exercise for myself as muscle and lately I've been jumping on my trampoline my mini trampoline and that gets the lymphatic system moving as well that is naturally like a body moving in gravity experience and probably there's a little bit of extra g-force when I'm bouncing on the trampoline and now we'll be doing this TRE thing and and seeing how that goes in terms of in terms of all this structural integration stuff and for me it's actually I I feel like mice I can go into that other state that manic state I've gone into it a few times over the last five years and I feel like say um like my ego structures and maybe there's transient hypo-frontality in mania and then I i loosen up and I lighten up and my center of gravity changes well in my mind if I can and then when I come back to regular consciousness I'm a little bit more contorted and everything so if I on a daily basis I'm sort of exercising my center of gravity in a way and maybe moving it slightly towards how it would be in mania I feel that would be part of embodying one's mania because one can get to the point where one's body is maybe close to that bodily expression in the flow state so they say you know we get stronger we get more agile and all these things in the flow state well we can get ourselves to the point where we are kind of that way and a lot of people go to the gym and they do they're like bicep curls and their sit-ups and everything and and something I learned in Rolfing and as well in body awakening method is a lot of what we do at the gym actually compresses and crushes our skeleton so if we're doing all these ab crunches we're actually um compressing the discs of the spine because we're making this really tight we're doing all these things to kind of make us like this and some people still look wonderfully beautiful in all muscular and stuff but there are certain muscles we don't strengthen it's actually more important to be stronger beside the rib cage like from the bottom of the ribs to the top of the hips on the sides to actually hold up our ribcage we're actually supposed to hold ourselves up with that sort of cummerbund type muscle now if we have really tight abs we're actually doing the opposite and we're contracting ourself whereas if we have strong side muscles we can hold ourselves up and if we're not holding ourselves up with that those muscles and our head slightly forward we're actually slowly going to be compressing we're going to be you know getting hunched over basically but that doesn't need to happen if we're holding ourselves up with those muscles standing with our feet straight blah blah blah find the lightworkers institute if you want to know more about that or read books on roll thing it's very interesting so to go with my little theory about one's perfect center of gravity of their body actually being in alignment with gravity so so the body's weight is actually carried by the joints and the skeleton and not the muscles because if our body weight is supported by our muscles then we're actually tensing up and that would change our structure and our center of gravity and part of my little theory with this is one of if I was to say one of the ways to get into flow it would be make sure you're in like a hundred percent perfect alignment to be in flow all the time in daily life and even if you think about it too like a madden your your perfect aligned self completely comfortable in your structure the way you carry yourself throughout life is going to be a lot different the pattern that's recognized to yourself and others as you it's going to be more elegant or more expressive happier and that is going to change your whole energy field and it's also going to change how people respond to you it's going to change your whole the whole trajectory of your life and now if you are in that pattern where you're very comfortable and within your own skin you would naturally think that you would be in a little bit more flow like you wouldn't be thinking I'm so this and I'm so that if you're just naturally the structure of who you're meant to be and to go with that I had this other little thought and theory that are negative thinking patterns it's actually electro magnetism in our brain it changes our brain that changes our neural plasticity it changes everything it actually gets us stuck in this prefrontal cortex and and gets in the way of this transient hypo-frontality in my mind it doesn't have to be transient hypo-frontality it should be actually transient frontality we should only have that bit of our brain turned on when we actually need it and this completely makes sense we're wondering how can we get five minutes of flow or how can we get an hour of flow my question is why aren't we in flow all the time and in this little thinking petty little ego consciousness just when that needs to turn on for convenience so I actually think that these thoughts and everything contribute to contorting the structure as well as changing one's energy field and the energy field is the pattern it's the hologram of who we are it's our information and I talked about the adjacent light body now we're not going to be our adjacent light bar version of ourselves if we're this material structure of thinking inner critic judging choosing version of ourselves and we've been conditioned to be that way unfortunately so we're not actually free we're prisoners of our own minds and and it's kind of sad but I actually think that if one has this prefrontal cortex stuff going on that changes our energy field in a way that negate that negates flow it can't happen that actually has to turn off which is like you know the fuzz screen on a TV like if we always had that playing in our minds and our heads that's kind of what the ego consciousness is it's all this noise and and and it's like they think oh we turn off the prefrontal cortex uh-oh what's going to happen it's like oh turns out we're in flow how is that possible well because the ego is just a bunch of noise it's not really saying anything that's actually real or true it's like a big hallucination it's if it's saying something that's not happening right in this moment or have anything to do with this moment then it's a hallucination and that's so-called normal and then people that go into mania decouple from that and and then are in extreme ecstasy feel free often run naked down the street because they feel like they've just been reborn and in a society that's not designed for someone to be that way it's very difficult for one to stay in that state and then a lot of people get really mad and stuff at some point but it's almost like it's almost like having to die to come back to this egocentric world and and I really feel that the flow state and the manic state and that extra energy like we think we need to think to to do stuff but it actually gets in the way of the energy that we naturally have we didn't have to think to do stuff when we were young children and again that world centricity and that's the thing in mania is a lot of us we feel very worldcentric for a portion of it and maybe that's the difference because in a flow state a person is kind of like doing their own thing for their own self a little bit like 0 2 i'm in flow and i'm getting lots of work done for me whereas in mania actually think it's a step beyond there's this extra extra extra energy and a person really wants to share and help the world and and that's what happens when the ego consciousness is completely blown away because we realize it's all one and we're just wanting to help the world not because we're thinking oh we want to help the world it's just we see that's the only thing to do there's nothing else to do and so I feel if a person is to really flow it's a matter of finding ones cause and that could almost be when I was talking about how the surfer has like a body perfectly adapted for riding that wave and they've they've taken hours and hours and hours to do that well how are we perfectly adapted without even spending a second to think about it and what would we do what would we do if there was no time there's no time left it's only right now that's it and Krishnamurti talks about psychological time and that's basically the ego thinking about itself and how it's not real and as soon as the ego thinks about itself it creates psychological time which prevents a person from being in the now which blocks flow so thinking about oneself is actually dis-ease we're not at ease with ourselves so we're thinking about ourselves which the thinking about the self the thinking is the self it's one thing and it's no amount of thinking with that self is going to allow a person to get into flow and it's interesting because that flow dojo is kind of designed to get a person to be so scared because like they're they're sort of doing things with their body that would get them killed if they weren't in a safe contraption now why do we need to be scared to the point of our pants in order to get our ego mind to turn off if we really saw that the ego mind itself is fear it actually creates all of this crap it's like as dangerous as jumping out of a plane that thinking about oneself which is an illusion there's no self there there's just this happening stuff you can't separate each thing that happens each gesture from that thing that is happening there's no separate thing if I move my hand I don't have to think move my hand in order to think in order for that to happen but since there's something going on here we think it actually has some kind of correlation but it has no correlation whatsoever and it's actually blocking the flow and being in this scared ego self-reflexive thinking state is creating all that fear which is creating all this toxic neuro chemicals and and bio chemicals in the body which is actually poisoning us so this process is actually killing us that's actually as dangerous as like a poisonous snake biting us twenty-four seven but we don't see that so it's more like a leech where we don't actually feel like it's on our skin it numbs us out it dulls us out we don't actually see anything that's happening we only see what our mind is saying how can we flow if we only see what our mind is saying which is something that happened ten years ago that's not happening now it's not now so to me it's not really this like big mystery I'm curious about well I've thought about it before it's like how would I design my life as a maniac because the thing is that it's difficult to actually be that way and I feel like at this point now I'm more of a where and that sort of X traumatic energy comes in and I kind of like have to block it so instead of instead of trying to get in flow I actually need to block flow I actually need to be like okay I'm just gonna calm like be calm for a while go to sleep because all this extra energies come in and be like whoa like I'm riding the wave of the universe and daily life what could be better i don't need to go on a freaking wave this is the most beautiful thing ever then what else could be more beautiful there's like cute little insects and spiders outside there's flowers and there's other people and I don't need a wave the fact we need a waiver to drop out of a plane to see it is absolutely ridiculous Get bonus content on PatreonSupport this show http://supporter.acast.com/bipolar_inquiry. 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The COVID-19 vaccines from Moderna and Pfizer are in many ways modern miracles. As you know by now, they were developed using technology called messenger RNA, or mRNA, which basically gives the body instructions to create antibodies for the novel coronavirus. It’s the first time a vaccine has been developed in this way. And now that we have this technology, we can start using it on all kinds of viruses, like the flu. Molly speaks with Andrew Hessel, a geneticist and microbiologist. He co-founded Genome Project-write, an international research effort.

The COVID-19 vaccines from Moderna and Pfizer are in many ways modern miracles. As you know by now, they were developed using technology called messenger RNA, or mRNA, which basically gives the body instructions to create antibodies for the novel coronavirus. It’s the first time a vaccine has been developed in this way. And now that we have this technology, we can start using it on all kinds of viruses, like the flu. Molly speaks with Andrew Hessel, a geneticist and microbiologist. He co-founded Genome Project-write, an international research effort.

The COVID-19 vaccines from Moderna and Pfizer are in many ways modern miracles. As you know by now, they were developed using technology called messenger RNA, or mRNA, which basically gives the body instructions to create antibodies for the novel coronavirus. It’s the first time a vaccine has been developed in this way. And now that we have this technology, we can start using it on all kinds of viruses, like the flu. Molly speaks with Andrew Hessel, a geneticist and microbiologist. He co-founded Genome Project-write, an international research effort.

The COVID-19 vaccines from Moderna and Pfizer are in many ways modern miracles. As you know by now, they were developed using technology called messenger RNA, or mRNA, which basically gives the body instructions to create antibodies for the novel coronavirus. It’s the first time a vaccine has been developed in this way. And now that we have this technology, we can start using it on all kinds of viruses, like the flu. Molly speaks with Andrew Hessel, a geneticist and microbiologist. He co-founded the Genome Project-write, an international research effort.

When many people think “leader,” they think big, bold personality--large and in charge. The truth is extroverted leaders are not the only stars of business success, and we have more and more successful “quiet leaders” to look to as examples such as Bill Gates or Jeff Bezos or iconic world-changers like Rosa Parks. In fact, researchers from Chicago-based consultancy firm, ghSmart, spent 10 years creating a database, called the CEO Genome Project. Upon analyzing their data, their findings included that over half of the CEOs who performed the best were introverts.  So let’s explore the behaviors that don’t always get fanfare, but can add incredible value through subtle, yet effective influence. Supportive Leaders “Quiet leaders” often lead with a supportive style as opposed to an authoritative style. Not ones to demand respect, these leaders humbly take a collaborative approach to decision making and execution. They are at their most influential when the people they lead feel heard, involved, and invested in the outcome. They influence through shared vision and team buy in. In fact, that is a pretty powerful way to focus people and processes towards success. Introspective Leaders Other leaders might take an even more unpretentious, reserved approach. Being known for being insightful, reflective, and candid, they think things through before acting. As reflective individuals who simply need a little time and space to decide on the next steps, their imaginative contributions often surprise those who otherwise perceive them as quiet. They are at their most influential when their sincere interest in a thoughtful plan and outcome is realized and others can look to them for stable, strategic outcomes. All Leaders Can Be Visible Leaders It is okay to not be the most social of leaders, however, be cautious of appearing overly private in an environment where transparency is celebrated. Close your door to get work done when it really matters, while also committing to being a highly visible leader by making the rounds, be it greeting your in-person team first thing in the morning, or checking in regularly on Zoom, Slack, or other digital communication tools used by remote teams. A reclusive or isolated leader does not inspire followers, so keep the end in that thoughtful mind of yours, and add visibility to your leadership strategy.  The endgame for leadership is influence. While there are many paths to influencing others, it’s important to own your unique way as part of your personal brand, and then position it as a valuable resource to the organization or effort for which you lead.  Take My Quiz to Learn About Your Leadership Personality Take this brief personality quiz to quickly define your distinct value, then leverage your results to position yourself as an influential leader who makes things happen.  Find out what makes you great, and what you might need to "bubble wrap" to fortify your more fragile traits that may hold you back. (AKA the things that simply aren't your jam.) Don't overthink any question...just go with your first instinct. After just a few short questions you will receive powerful insight into how you show up at your best as a leader, and you will even receive a downloadable PDF of your results! You can take it for FREE here: https://amberhurdle.com/leadershipquiz/

Dr. Clare Craig, an experienced 20 year pathologist veteran within and outside of the NHS, joins us on 30th Dec to talk about a number of key COVID scientific matters that have been significantly been misrepresented in 2020. Expect to hear us cover Asymptomatic Transmission, Case Definition, SAGE, PCR Testing, Lateral Flow Testing, Excess Deaths, Hospital Pressures, the New Variant, False Positives, Herd Immunity, Immunity Metrics, Interesting Alternative Surveillance and much more. Full show notes listed below.  Clare has worked not only with the NHS, but also on the important 100,000 Genome Project and AI cancer diagnostics, and given her specialism is incredibly familiar with testing and diagnostics. With this experience and her advanced scientific faculties, she is able to interpret the science in ways most cannot. As such, whilst she recognises the viral pressure in 2020, she is highly sceptical with the approaches being taken nationally and globally.  This episode is a synthesis of the most important scientific questions AdapNation has received regarding the COVID UK response in recent weeks. We cover a great deal, and should provide essential context and scientific insight to the whole nation - no matter your beliefs and position regarding the govt actions.  It’s a long interview due to the breadth of topics, the need to answer them with sufficient depth, and this unique situation to get such an expert speak at length to our many scientific curiosities. As a top tip, try listening at 1.5x speed - it’s sounds good and condenses the listening time.  ESSENTIAL LISTENING for all. Please share to your friends and family to widen and expand our public understanding of the actual science regarding COVID.    Check out the Full Show Notes of What’s Discussed - https://adapnation.io/154-dr-clare-craig-covid-science/   The #BeYourBest Journey : https://adapnation.io/beyourbest-journey/ (£10 coupon BESTYEAR-2020)    Where to find DR CLARE CRAIG: ▪︎ Twitter: @ClareCraigPath ▪︎ Dr. Clare’s website: logicinthetimeofcovid.com    ⭐️⭐️⭐️⭐️⭐️ If you like this and other AdapNation episodes, please don't forget to subscribe to the channel, as well as leaving a 5 star review and letting friends and family know of this Podcast on Social Media.   AdapNation Useful Links: The #BeYourBest Self-Optimisation Journey  ■ Social - Instagram & Facebook & Tons of Free Website Content  ■ #HyperWorkouts - Expertly written Gym Workout Plans, with video guides, print-outs & HeavySet import  ■ AdapNation Butler - An Online Personal Assistant that can inspire easy and tasty Home-cooking  ■ AdapNation Food Diary - 100’s of Tasty Healthy Meal Ideas, that are focussed on helping you thrive 

​​​​Dr. Haskell Hart joins the show to discuss his new book -The Sasquatch Genome Project: A Failed DNA Study. Dr. Haskell V. Hart holds a PhD in chemistry from Harvard University and has a physical, inorganic, and analytical chemistry research background. He was Associate Professor of Chemistry, University of North Carolina at Wilmington, after which he was Senior Staff Research Chemist and Research Manager at Shell Chemicals. At Shell he both conducted analytical research and managed various analytical departments. His research interests have included analytical applications of x-ray diffraction, electron diffraction (two database patents), and gas chromatography-mass spectrometry. Since his retirement, he has focused on long-range detectors and application of DNA sequencing to species identification, especially relict hominoid candidates.  To purchase Dr. Hart's Book:  The Sasquatch Genome Project: A Failed DNA Study

From the Genome Project to modeling novel viruses, supercomputing is already tackling some of the world’s biggest challenges. In this episode, we’ll imagine what could be solved with an exponential increase in computing power, delving into Exascale — the next era of supercomputing.

Basic Science Research

Using digital tools to engineer life, Andrew Hessel(@andrewhessel) is a pioneer in synthetic biology. He's the Co-Founder of Humane Genomics, a company that creates synthetic viruses to target cancer cells. He's also the Chairman of Genome Project-write, an ambitious project aiming to create a genome from the ground up. What we discuss with Andrew:How synthetic biology can open up new possibilities for creating personalized medicine, food, and wood.Why synthetic biology will surpass information technology as an economic engine and driver of societal change.Nature's innate intelligence and the power of biology.Exploring the potential advantages of living underground.Watch the full Terence Mckenna interview here.---⭐️

Ira Pastor, ideaXme life sciences ambassador, interviews Dr. Rudolph Tanzi, Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard University, Vice-Chair of Neurology, Director of the Genetics and Aging Research Unit, and Co-Director of the Henry and Allison McCance Center for Brain Health at Massachusetts General Hospital. Ira Pastor Comments: On this episode we are going to journey back to the topic of Alzheimer’s disease (AD), projected to affect over a 100 million people worldwide by mid century.  Dr. Rudolph Tanzi: Dr. Rudolph Tanzi is the Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard University, Vice-Chair of Neurology, Director of the Genetics and Aging Research Unit, and Co-Director of the Henry and Allison McCance Center for Brain Health at Massachusetts General Hospital (MGH), and has been investigating the genetics of neurological disease since the 1980s when he participated in the first study that used genetic markers to find a disease gene for Huntington's disease. In 1990, Dr. Tanzi received his Ph.D. in neurobiology at Harvard Medical School, where his doctoral thesis was on the discovery and isolation of the first Alzheimer's disease gene - the amyloid precursor protein (APP), published in 1987 in Science. Dr. Tanzi's work in Alzheimer's disease research: Dr Tanzi co-discovered all three familial early-onset Alzheimer's disease (FAD) genes and several other neurological disease genes including those responsible for Wilson’s disease. Dr Tanzi also serves as Chair of the Cure Alzheimer's Fund Research Leadership Group and leader of the Cure Alzheimer's Fund Alzheimer’s Genome Project, where he has carried out multiple genome wide association studies (GWAS) of thousands of Alzheimer’s families leading to the identification of novel AD candidate genes, including CD33, and ADAM10 genes. Dr Tanzi has also worked on the role of zinc and copper in AD, on gamma secretase modulators for the prevention and treatment of Alzheimer's, and on human stem cells to create an “Alzheimer’s-in-a-Dish”, three-dimensional neural culture system, that was the first to recapitulate both pathological hallmarks of Alzheimer’s disease. Dr. Tanzi has published over 500 scientific papers, including the top three most cited papers in the field of Alzheimer's disease research. Dr. Tanzi also co-authored the books "Decoding Darkness: The Search the Genetic Causes of Alzheimer's Disease", the New York Times Best Selling book “Super Brain: Unleashing the Explosive Power of Your Mind to Maximize Health, Happiness, and Spiritual Well-Being”, "Super Genes: Unlock the Astonishing Power of Your DNA for Optimum Health and Well-Being", and "The Healing Self: A Revolutionary New Plan to Supercharge Your Immunity and Stay Well for Life" with Deepak Chopra. Dr. Tanzi in the Media Dr. Tanzi has made numerous television appearances on shows such as CBS This Morning and Dr. Oz. He also hosts the shows "Super Brain with Dr. Rudy Tanzi", "Super Genes with Dr. Rudy Tanzi" and "The Brain Body Mind Connection with Dr. Rudy Tanzi and Dr. Deepak Chopra" on PBS television. In addition to his work in AD and brain health, Dr. Tanzi has wide ranging musical pursuits. Dr Tanzi professionally plays keyboards, most recently with Joe Perry and Aerosmith. He also co-wrote the song tribute to Alzheimer's patients called "Remember Me", performed by singer Chris Mann. He plays keyboards on the albums: "Aerosmith: Music from Another Dimension", and "Joe Perry: Switzerland Manifesto." On this episode we will hear from Dr Tanzi about: His background; how he developed an interest in neurobiology and the domain of AD. His work on the Alzheimer's Disease - Infectious Disease connection and the Alzheimer's Disease - Neuro-inflammation connection. His work with stem cells and regenerative medicine. His work in the area of aging, brain health and the "psycho-biologic" aspects of health and wellness. About mental health and self care during the COVID-19 crisis. Credits: Ira Pastor interview video, text, and audio. Follow Ira Pastor on Twitter:@IraSamuelPastor If you liked this interview, be sure to check out ourinterviewexploring the viral causes of Alzheimer's! Follow ideaXme on Twitter:@ideaxm On Instagram:@ideaxme Find ideaXme across the internet including on iTunes,SoundCloud,Radio Public,TuneIn Radio,I Heart Radio, Google Podcasts, Spotify and more. ideaXme is a global podcast, creator series and mentor programme. Our mission: Move the human story forward!™ ideaXme Ltd.

Gidon Akler, MD talks about collecting samples and sequence genomes from COVID-19 patients. They hope this will help identify protective and risk bearing genetic factors, there would help in diagnostic and treatment methods. Below is a summary: The Israel Ministry of Health and the Israel Innovation Authority, along with Sourasky (Ichilov) Medical Center and Rambam Health Care Campus in addition to a startup venture called Geneyx have formed a public-private consortium that will collect samples and sequence genomes from thousands of COVID-19 patients in an effort to identify protective and risk-bearing genetic factors with the aim of identifying new diagnostic and treatment methods. The startup offers next-generation sequencing data analysis, interpretation, reporting and storage products and services. You can see more here and here 

Andrew Hessel is the CEO of Humane Genomics Inc., a seed-stage company developing virus-based therapies for cancer, starting with dogs and also co-founded the Genome Project-write, an international scientific effort working to engineer large genomes, including the human genome. Andy has been Singularity University faculty since 2009 and from 2012-2017 was the Distinguished Researcher at Autodesk Life... The post Programming Life, Preventing Bioterrorism and Viruses that Kill Cancer | Andrew Hessel appeared first on The Syndicate.

Andrew Hessel (@andrewhessel) is the CEO of Humane Genomics Inc., a seed-stage company developing virus-based therapies for cancer, starting with dogs and also co-founded the Genome Project-write, an international scientific effort working to engineer large genomes, including the human genome. [spreaker type=player resource="episode_id=22118145" width="100%" height="80px" theme="light" playlist="false" playlist-continuous="false" autoplay="false" live-autoplay="false" chapters-image="true" episode-image-position="right" hide-logo="true" hide-likes="false" hide-comments="false" hide-sharing="false" hide-download="true"]

Andrew Hessel (@andrewhessel) is the CEO of Humane Genomics Inc., a seed-stage company developing virus-based therapies for cancer, starting with dogs and also co-founded the Genome Project-write, an international scientific effort working to engineer large genomes, including the human genome.Andy has been Singularity University faculty since 2009 and from 2012-2017 was the Distinguished Researcher at Autodesk Life Sciences.Andy’s goal is to help people better understand and use living systems to meet the needs of society and he has written articles on genetic technology for The Atlantic, Wired UK, and Huffington Post and given over 100 invited talks on next-generation biotechnology.In our wide-ranging conversation, we cover many things, including:- How we can use viruses to kill cancer- The reason synthetic biology is THE technology of this century- Why CRISPR babies we an inevitability and why we didn’t discuss them beforehand- How we can prevent biotech from becoming problematic- Why Andrew isn’t all that worried about bioterrorism- The reason students should study biological systems- How healthcare and pharma transform as we edit the code of life- The important differences between our ability to read and write genomes- What gene drives mean for the future of our species- Why viruses are the low hanging fruit of fighting disease- What biotech can mean for the sustainability of our planet- Why Andrew is fundamentally optimist about our future

THE EDTECH GENOME PROJECT : A SETDA show with their Executive Director Candace Dodson and  Jefferson Education Exchange, Professor ,  CEO/President Bart Epstein , a sector wide effort  to discover why Ed Tech tools work differently in various contexts. 

THE EDTECH GENOME PROJECT : A SETDA show with their Executive Director Candace Dodson and  Jefferson Education Exchange, Professor ,  CEO/President Bart Epstein , a sector wide effort  to discover why Ed Tech tools work differently in various contexts. 

In our first (pilot) episode we talk with Professor Bill Newman from Manchester about Rare opportunities and how will the 100, 000 Genomes Project change health care?Professor Bill Newman is Professor of Translational Genomic Medicine in The Manchester Centre for Genomic Medicine at the University of Manchester and Honorary Consultant at Manchester University NHS Foundation Trust. He is also Director of the Greater Manchester Genomic Medicine Centre for the 100,000 Genomes Project.Our RARE/D conversations are hosted by Nichola Garde and Mariangels Ferrer, and aim to stimulate and capture public conversation about one of the biggest changes in how we think about health – what does it mean to have a rare disease and how we all may become “RARE” when genomics becomes part of mainstream healthcare. This project will focus on the psychological, ethical and economic debates and in turn show how social science is helping to shape the health care of the future.

The IndiGen project will map genes across India's ethnic groups to discover clinically actionable genetic information. Shambhavi Naik, Pranay Kotasthane and Anirudh Kanisetti discuss the importance of this project, the opportunities it presents and the challenges it faces. You can listen to this show and other awesome shows on the IVM Podcasts app on Android: https://ivm.today/android or iOS: https://ivm.today/ios, or any other podcast app. You can check out our website at http://www.ivmpodcasts.com/

George Church @geochurch) is a professor of genetics at Harvard & MIT, director of the Personal Genome Project, co-author of 509 papers, 143 patent publications and developed methods used for the first genome sequence (1994) & million-fold cost reductions since. It is NO exaggeration to say George's innovations have contributed to nearly all “next generation” DNA sequencing methods... The post George Church on Synthetic Biology, Climate Change and the SUPERHUMAN Genome Project appeared first on The Syndicate.

From 2006 to 2012, scientists and researchers from around the US collected samples of DNA, photographs and recordings of a creature science insists does not exist.  During and after the findings, the one person strong enough to come forward and put her name on the project was labeled a fraud, harassed and threatened for pursuing pure science and publishing her findings. What was at stake here? What explains the discrimination and treatment she received from the scientific community, the Bigfoot community and finally, the world in general. If you want to hear a story that will someday be a major motion picture and book, pull up a chair and a headphone and get ready to experience the Sasquatch Genome Project and how the scientific community tried to take it and Dr. Melba Ketchum down. Dr. Ketchum’s comments have been relayed through surrogate Robin Haynes McCrae.

George Church @geochurch) is a professor of genetics at Harvard & MIT, director of the Personal Genome Project, co-author of 509 papers, 143 patent publications and developed methods used for the first genome sequence (1994) & million-fold cost reductions since.It is NO exaggeration to say George's innovations have contributed to nearly all "next generation" DNA sequencing methods and companies; plus his lab's work on chip-DNA-synthesis, gene editing, and stem cell engineering resulted in founding additional application-based companies spanning fields of medical diagnostics and synthetic biology/therapeutics (all of which has led to the creation of over 14 biotech companies he's helped co-foundGeorge is the director of the IARPA BRAIN Project and NIH Center for Excellence in Genomic Science and his many honors include election to NAS and NAE and Franklin Bower Laureate for Achievement in Science.George is the author of Regenesis: How Synthetic Biology Will Reinvent Nature and Ourselves and now spends his free time trying to revive the Wholly Mammoth to combat climate change and save the world while remaining the foremost pioneer in the future of synthetic biology and genetic engineering.You can listen right here on iTunesIn today's episode we discuss:* The beginnings of the Human Genome Project and why in a lot of ways George thinks it was a waste of money* The future of genome sequencing and writing and where it's headed* Why George isn't hugely worried about genetic engineering leading to greater inequality* What scares George most in a world of synthetic biology* Why the best solutions to climate change are inevitably bio-based* How George's team is working to revive mammoths to combat climate change* The importance of being guinea pig number one* Why we should be inspired but not limited by nature* The real risk of bioterrorism* How to get benefits from your DNA without exposing your results* The importance of gene editing on getting humanity to space Make a Tax-Deductible Donation to Support The DisruptorsMake a Tax-Deductible Donation to Support The DisruptorsThe Disruptors is supported by the generosity of its readers and listeners. If you find our work valuable, please consider supporting us on Patreon, via Paypal or with DonorBox powered by Stripe.Donate

Genetic futurist and founder of the Genome Project, Andrew Hessel breaks down the landscape of our genomic future as we get into all things emerging technology as part of our series for our project on for Personalized Medicine by Design.

Richard speaks with a doctor of veterinarian medicine about her controversial DNA analysis of supposed Sasquatch hair samples.   GUEST:  Dr. Melba Ketchum grew up in Texas City, Texas. She attended Texas A&M University where she received her doctorate in Veterinary Medicine after five years at the university. She had a mixed veterinary practice until she founded DNA Diagnostics. Dr. Ketchum is the president and founder of DNA Diagnostics, Inc. d/b/a Shelterwood Laboratories. Established in 1985, DNA Diagnostics has become a leader in all types of DNA testing including: human and animal forensics, human and animal paternity and parentage testing, disease diagnostics, trait tests, animal and human identity testing, species identification and sex determination. Most common species of animals are tested at DNA Diagnostics.

In this episode, Teri welcomes Jim Schwoebel, the founder and CEO of Neurolex, a diagnostics company that is applying speech analysis to detect various health conditions early, before full-blown symptoms occur. Their core vision is to pioneer a universal voice test, like a blood test with extracted features and reference ranges, for use in primary care to refer patients to specialists faster.Jim is a Georgia Tech-trained biomedical engineer and co-founder/partner in Atlanta-based accelerator CyberLaunch. He got the idea for Neurolex after seeing his brother hospitalized for a psychotic episode, eventually being diagnosed with schizophrenia. He wondered how these types of conditions could be diagnosed earlier on, before the patient was past the point of pre-clinical intervention.The company is currently in the midst of over 20 research trials taking place around the world, helped by 30 fellows they have recruited to help gather a massive dataset on voice diagnosis. Key points from Jim!Voice signals and how they can be correlated with various types of illnesses and diseases.How patterns in voice could potentially help clinicians in diagnosing mental illness.Research FindingsYou can predict with very high accuracy just with a voice sample who would or would not develop a psychotic episode.Voice SamplesCollecting samples is more of an in-clinic procedure because there are a lot of issues taking samples at home. It’s usually a short test that is done like a voice survey. It takes 3 to 5 minutes.For some diseases, there are alternative voice sample collection tests.The voice responses are sent to the cloud or locally in the clinic then a report is generated so that the health provider can use that information to infer the health of the patience.Jim believes with time they will find more robust models that can be used within home environments.Audio Data ModelingThey apply techniques that are use MFCC coefficients and ASR models to voice labels.For small data sets, they use old school techniques like support vector machine modeling or logistic regression.They either look at it as a binary problem or regression problem and estimate the scale itself, question by question from a voice file.They are continuously learning new features and traits that are correlated with voice featuresThey also transcribe the audio and extract features from the text.Getting enough data is the biggest challenge right nowVoice Sample SourcesThey get them from academic collaborations. They have collaborations with the University of Washington where undergraduates go into clinics and collect data from patients. Patients have to consent to giving a voice sample.They’ve created a product called SurveyLex that helps them create, design and deploy voice surveys in the cloud like a SurveyMonkey survey. They have optimized it for research use and it gets a lot of data quickly. Different health entities are using the product on a subscription basis.The Voice Genome ProjectThey’ve been brainstorming on how to engage external collaborators in a more comprehensive way and also centralize their work because so far it’s too scattered. They have separate work a Harvard, MIT, Stanford, and UCSF.They are trying to create one survey using SurveyLex. They will launch it in January 2019.The first step will be getting a lot of survey information tied to voice information which will mainly include self-reported health inventories labeled with voice files.To contribute, people can donate their voice and be part of the research study or become a research collaborator.Collaborators can analyze the data beyond how Neurolex has.Meaning of Voice First Health to JimIt’s looking within voice and using that information to improve healthcare through our work.Links and Resources in this EpisodeNeurolex.aiReach out to Jim at js@neurolex.coDr. Teri Fisher on TwitterDr. Teri Fisher on LinkedInPlease leave a review on iTunes See acast.com/privacy for privacy and opt-out information.

Imagine building something like a cell phone, a car, or a house and then imagine that thing went on to reproduce itself. Well, that is what Andrew Hessel, the guest on this episode of Bulletproof Radio, and the people at the human Genome Project-Write intend to do. Starting by helping people better understand and use living systems to meet the needs of society.Andrew Hessel is the CEO of Humane Genomics Inc., a seed-stage company developing virus-based therapies for cancer, starting with dogs. He is also a co-founder of the Genome Project-write, the international scientific effort working to engineer large genomes, including the human genome. Andrew does things that sound like science fiction and even the way he describes himself, as a synthetic biologist, contains a set of words that did not exist until very recently. In the interview, we get into what exactly that is, what can be done through DNA splicing, and why they use viruses to get the job done.

Imagine building something like a cell phone, a car, or a house and then imagine that thing went on to reproduce itself. Well, that is what Andrew Hessel, the guest on this episode of Bulletproof Radio, and the people at the human Genome Project-Write intend to do. Starting by helping people better understand and use living systems to meet the needs of society.Andrew Hessel is the CEO of Humane Genomics Inc., a seed-stage company developing virus-based therapies for cancer, starting with dogs. He is also a co-founder of the Genome Project-write, the international scientific effort working to engineer large genomes, including the human genome. Andrew does things that sound like science fiction and even the way he describes himself, as a synthetic biologist, contains a set of words that did not exist until very recently. In the interview, we get into what exactly that is, what can be done through DNA splicing, and why they use viruses to get the job done.

Nancy J Kelley, JD, MPP, president & CEO of Nancy J Kelley + Associates, provides an overview of the current work in genomic research. As an executive and lawyer, Nancy J Kelley has over twenty years of executive management and board experience, with a critical focus on healthcare, life science, and research, especially as they relate to business and legal, government, non-profit, and academic areas. Nancy J Kelley + Associates' mission is to aid science and medicine through building and strategic planning, to push for scientific and medical breakthroughs. Their team works to advance translational genomic research that could potentially cure disease as well as improve the quality of life. Nancy J Kelley discusses her involvement with Genome Project-write (GP-write) an international project comprised of 200 scientists from 15 countries and over 100 institutions. GP-write's focus is to gather a full understanding of life, to reduce the overall expense of engineering and testing large genomes in cell lines, and create new tools and specific technologies for engineering biology. She relates how the project has a goal of understanding the blueprint to life provided by the Human Genome Project, but an equally important goal is to develop new technologies. The Human Genome Project was an international project with a primary mission—to determine the exact sequence of nucleotide base pairs that, together, make up human DNA, as well as to identify and map all genes of the human genome. The science executive explains that researchers must build genomes in order to fully understand how biological systems operate. And this understanding will have long-term implications in nearly every arena, from food, to new materials, to energy, healthcare and beyond. Through this work, researchers hope to find new ways to make cell lines resistant to viruses. Nancy J Kelley states that synthetic biology, or as she refers to it—engineering biology—is a growing field that businesses and governments are extremely interested in. And although the GP-write project is slated for a ten-year run only, her expectation is that GP-write will open the doors for continued study and developments for many years to come.

Elena Botelho, co-author of the New York Times & WSJ Bestselling Book "The CEO Next Door," which takes an in-depth look at how leaders make it to the top of their professions — and stay there.The book points out that many myths surrounding corner-office occupants--for example, they are Ivy League grads laser-focused on business success from an early age--arise from the public's focus on Fortune 500 CEOs, a skinny slice of the leadership pie. By including CEOs from startups and small-to-midsize companies in their data, the authors trace a more accessible path to leadership.Botelho and Powell identified four behaviors associated with CEO success. Entrepreneurs have "inimitable advantages" in three of those behaviors, Botelho says--and "dangerous gaps in one." Botelho is the founder and co-leader of the CEO Genome Project. The book, which is based on the project's research, is filled with tips and stories about great CEOs, shattering some of the myths about the path to leadership in the process.In an analysis of 2,600 leaders over a 10-year period, Botelho and Kim R. Powell found, for example, that the actions and attitudes that exemplify successful CEOs are not gender specific.“(S)tatistically, gender has no impact on the probability of delivering strong results as a CEO,” she said. The 50-60 women CEOs the authors interviewed shared a similar mindset, Botelho said."They certainly are savvy and aware of the challenges of being a woman, but in the professional context, they first and foremost most define themselves with a professional identity. They say 'I’m a turnaround CEO,' or 'I am a growth-oriented leader.'"- https://amzn.to/2I1ypZxPlease do NOT hesitate to reach out to me on LinkedIn, Instagram or via email mark@vudream.comLinkedIn - https://www.linkedin.com/in/mark-metry/Instagram - https://www.instagram.com/markmetry/Twitter - https://twitter.com/markymetryHumans 2.0 Twitter - https://twitter.com/Humans2PodcastMedium - https://medium.com/@markymetryFacebook - https://www.facebook.com/mark.metry.9Mark Metry - https://www.markmetry.com/

In this episode, we sit down with Andrew Hessel to discuss the future of synthetic biology. Andrew Hessel is the CEO of Humane Genomics Inc., a seed-stage company developing virus-based therapies for cancer, starting with dogs. He is a co-founder of the Genome Project-write, the international scientific effort working to engineer large genomes, including the human genome. From 2012-2017 Andrew was the Distinguished Researcher at Autodesk Life Sciences. He has been Singularity University faculty since 2009. His goal is to help people better understand and use living systems to meet the needs of society. To support the podcast, consider donating at: http://patreon.com/catcoherence

Genomicist George Church talks about his disappointment with the Human Genome Project. He argues that his field's true golden age began right after the Genome Project ended, and is now building extraordinary momentum. We discuss the blistering price/performance improvements in both DNA synthesis and sequencing. And for those who are new to this field, we arm you with highly accessible definitions of its four major domains (sequencing, DNA synthesis, DNA editing, and assembly). Learn more about your ad choices. Visit podcastchoices.com/adchoices

Today's episode on Redefining Medicine features Rudolph Tanzi, PhD: Vice-Chair of Neurology and Director of the Genetics and Aging Research at Massachusetts General Hospital, and the Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard Medical School. Co-discoverer of three of the first Alzheimer’s disease genes, Dr. Tanzi has identified several other genes through his direction of the Alzheimer’s Genome Project—receiving the highest awards in his field, including TIME's 100 Most Influential People in the World. A strong proponent of Integrative Medicine, Dr. Tanzi describes the practice as "flexible and openminded in how we do research, and how we treat patients."

Jon: Welcome to episode 255 of The Digital Life, a show about our insights into the future of design and technology. I'm your host, Jon Follett, and with me is founder and co-host, Dirk Knemeyer. Dirk: Greetings, listeners. Jon: For our podcast topic this week, we're going to chat a little bit about the Redwood […]

This week’s RTO update is a little shorter, but has some great material in it nonetheless. Absolutely do not miss Invision’s Design Genome Project. The work going in to that is producing a lot of...

Elena Botelho, Co-author of "The CEO Next Door" and Partner in leadership advisory firm ghSMART, talks with Laura Zarrow about how you can tap into your unique strengths, and grow into being a more successful and impactful leader, regardless of where you started.Elena L. Botelho is co-author of "The CEO Next Door", founder and co-leader of the CEO Genome Project, and a partner at leadership advisory firm ghSMART. Elena’s passion is helping CEOs who aspire to elite levels of performance and social impact achieve their full potential. CEOs engage Elena to accelerate their success and protect them from painful setbacks. The CEO Genome Project is an extensive research and client practice that provides guidance to CEOs and executives on the path to becoming CEO, including behaviors that lead to the top, typical setbacks CEOs encounter and ways to prevent them. Elena is a member of McKinsey M&A Integration Council—an invitation only forum of senior executives from major corporations to share M&A best practices. Prior to joining ghSMART, Elena was an Associate Partner at McKinsey & Company, where she advised CEOs and senior executives of Fortune 500 companies and major private equity players on the issues of M&A, business strategy, organizational change, and operations. Her clients included major corporations in media, technology, and financial services. Elena grew up in Moscow and Azerbaijan and now lives with her family in Washington D.C. She holds an MBA from Wharton.Aired on February 28, 2018. See acast.com/privacy for privacy and opt-out information.

“You should never get attached to your idea because it will change.” In this episode of All The Responsibility, Nils and Rob interview Ryan Troll, co-founder of the PM Genome project. Ryan started focusing on startups and the startup space after reading a Harvard Business Review about the life of CEOs. In 2016 he and Read More

Jeff told Laura he recently completed a DNA test. Curiosity about personal history, and really the genetic results are what they chat about in episode no. 18. Besides learning about Texas citizenship (apparently that is a thing), Jeff unpacks his DNA results he received from his test o’ spit.

Four traits characterize high-performing CEOs according to an extensive 10-year study called the CEO Genome Project. See acast.com/privacy for privacy and opt-out information.

In today’s episode, Xavier Kochhar (CEO of The Video Genome Project) talks about how his technology is changing the way the world accesses, organizes, and analyzes data. During our conversation, Xavier also explores the next... The post Xavier Kochhar: The Video Genome Project’s CEO On Data, Access, and Personalization appeared first on Up Next.

2017.03.29 The Falcon Genome Project commenced in 2010 and resulted in de novo genome assemblies for the peregrine and saker falcons in 2013, which have been used to understand avian evolution, demography and evolutionary adaptation. The two reference genomes have been the basis for further exploration into adaptation in saker falcons across their geographic range in Eurasia, resulting in some surprising patterns and inferences on the recent history of this species. This lecture describes the anatomy of this genomics project, the challenges and outcomes of the research, and the current research directions of the Falcon Genome Project. Speakers Michael Bruford Professor of Biodiversity, Cardiff University

This week we chat with Xavier Kochhar, the Founder and CEO of The Video Genome Project® (The VGP), a company whose mission is deeply rooted in the belief that the world's data should be accessible for all to use. VGP is revolutioning video content curation tools (such as search, recommendation, and personalization) and the way that publishers, content providers, marketers, and users all over the world will utilize any form of video content. It's a mind blow. Prior to VGP, Xavier was Managing Partner of MediaLink (acquired by Ascential plc), a strategic advisory firm operating at the intersection of the media, advertising, and technology communities and is deeply versed in the trends of media and technology across multiple categories. You're going to learn alot about the future of video discovery when we chat with Xavier Kochcar, the Founder and CEO of The Video Genome Project on the Tech Cat Show.

Coming up on Biotechnology Focus Radio: The launch of a new Canadian Regenerative Medicine Alliance, Canada’s House of Commons passes the Genetic Discrimination Act Bill S-201, and a One-Two Punch that May Floor the Worst Infections by stopping antibiotic drug resistance. Welcome to another episode of Biotechnology Focus Radio. I’m your host Shawn Lawrence, here to give you a rundown of this week’s top stories on the Canadian biotech scene. Our first story this week takes us to Toronto, where Antibe Therapeutics Inc. reports it has signed an exclusive licensing and distribution agreement with a pharmaceutical company, Laboratories Acbel SA (Acbel), for its lead product ATB-346. ATB-346 is an anti-inflammatory drug, designed to spare the gastrointestinal tract of the ulcers and bleeding normally associated with NSAIDs. The agreement covers distribution in Greece, Romania, Serbia, Bulgaria, Albania, Algeria and Jordan. Antibe will receive an upfront, non-dilutive payment of $1.1 million, and is entitled to receive a 5 per cent royalty on net sales of ATB-346 in these countries. The agreement has a 30-year term with contemplated renewals thereafter. Acbel, through its affiliates and partners, is the largest seller of naproxen in this region, which represents approximately one per cent of the global market for nonsteroidal anti-inflammatory drugs (NSAIDs). The global market for NSAIDs is in excess of US$12 billion (Evaluate Pharma). In a recent Phase 2 clinical trial, ATB-346 was found to be highly effective in reducing the pain associated with osteoarthritis of the knee. Antibe says it will now initiate two larger Phase 2 double-blind trials: a placebo-controlled dose-ranging study to determine the go-to-market dose, and an active comparator trial to demonstrate superior GI safety. Antibe also has two other therapeutic candidates in development: ATB-352 and ATB-340. ATB-352 is a non-addictive analgesic for treating severe acute pain and ATB-340 is a GI-safe derivative of aspirin. Antibe intends to leverage data across its programs to secure licensing agreements whenever possible. In regulatory news Canada’s House of Commons has passed Bill S-201 (An Act to Prohibit and Prevent Genetic Discrimination in Canada), as it was presented, by the Standing Committee on Justice and Human Rights on Wednesday March 8, 2017. According to Bev Heim-Myers, chair of the Coalition for Genetic Fairness and CEO of the Huntington Society of Canada (HSC), while the Bill will still have to go to the Senate, all indications point to it being fully supported. Heim-Myers adds that Canada has finally caught up to other western jurisdictions in regards to protection of genetic information and Canadian legislation has caught up to science. Since the Genome Project was launched in the early 1990s, Canada had been the only G7 country that had not taken steps to prevent genetic discrimination. With this decision, this changes. Qu Biologics Inc., a biopharmaceutical company developing Site Specific Immunomodulators (SSIs) that aim to “reboot” the body’s innate immune system, has reported positive genetic analyses of their recently completed Phase 2 clinical studies in Crohn’s Disease (CD) and Ulcerative Colitis (UC). These findings suggest that, for the first time in the field of inflammatory bowel disease (IBD), personalized medicine and the application of genetic testing may identify patients highly likely to respond and go into remission with treatment. The analyses identified common IBD-related genotypes with a high likelihood of response to SSI, suggesting that genetic testing may identify a large subset of CD patients (representing approximately 60% of the CD population) with a greater than 80% likelihood of responding to QBECO treatment, the large majority of which achieved remission on SSI treatment. Dr. Hal Gunn, CEO of Qu Biologics, stated, “We are very excited about the possibility of identifying CD and UC patients highly likely to respond to SSI treatment, which would substantially de-risk future trials and be an important advance for patients who currently face the uncertainty of knowing whether current immunosuppressive IBD treatments, which can be associated with significant side effects, will work for them or not.” Dr. Shirin Kalyan, Qu’s Director of Scientific Innovation, added, “Unlike current IBD treatments that suppress immune function, we believe that SSIs, which restore innate immune function, treat the underlying cause of IBD. Consequently, unlike other treatments, we were able to identify IBD-related genotypes highly responsive to SSI therapy. It is exciting that the genotypes correlated with SSI response are highly relevant to SSIs’ mechanism of action.” Based on the promising results of Qu Biologics’ recently completed Phase 2 study in CD, a follow-on Phase 2 study in moderate to severe CD is planned to confirm these findings. Study initiation is anticipated in late 2017. If the genetic analysis results are confirmed in follow-on studies, Qu Biologics’ QBECO SSI has the potential to become first-line therapy for a majority of IBD patients. In funding news, the Federal Economic Development Agency for Southern Ontario (FedDev Ontario) is providing TechAlliance of Southwestern Ontario with up to $1.32 million to deliver on a new incubation program, called BURST, which will provide 30 innovative technology entrepreneurs in southwestern Ontario with mentoring and business guidance, seed funding, exposure to potential investors and access to a dedicated working space in Western University's Discovery Park. As entrepreneurs establish and grow their businesses with help from this program, it is expected that up to 45 new full-time jobs will be created. Building on London's history of innovation in health sciences, a unique partnership with the London Medical Network will also be established to help eligible medical technology companies receive funding. The announcement was made on behalf of the Honourable Navdeep Bains, Minister of Innovation, Science and Economic Development and Minister responsible for FedDev Ontario. In Hamilton, ON, McMaster University researchers say they have found a new way to treat the world’s worst infectious diseases, the superbugs that are resistant to all known antibiotics. The McMaster team published their findings in the journal Nature Microbiology last week. Eric Brown, senior author of the paper, a professor of biochemistry and biomedical science at McMaster’s Michael G. DeGroote School of Medicine and a scientist of the Michael G. DeGroote Institute for infectious Disease Research says his team looked for compounds that would mess with these antibiotic resistant bacteria, focusing on Gram-negative bacteria which are resistant to all antibiotics including last resort drugs, such as colistin, and lead to pneumonia, wound or surgical site and bloodstream infections, as well as meningitis in healthcare settings. Brown explains that Gram-negative bacteria have an intrinsically impenetrable outer shell that is a barrier to many otherwise effective antibiotics, and this makes these infections deadly, particularly in hospital settings. His team tested a collection of 1,440 off-patent drugs in search of one that might compromise that barrier in the superbugs. “These pathogens are really hard nuts to crack, but we found a molecule that shreds that shell and allows antibiotics to enter and be effective,” Brown said. The scientists discovered the antiprotozoal drug pentamidine disrupts the cell surface of Gram-negative bacteria, even the most resistant. The anti-fungal medication was particularly potent when used with antibiotics against multidrug resistant bacteria. Moreover, Pentamidine, when used with other antibiotics, was found to be particularly effective against two of the three pathogens which the WHO has identified as having the most critical priority for development of new antibiotics. Those were Acinetobacter baumannii and the enterobacteriaceae. The combo therapy also had some impact on the third most critical bacteria, Pseudomonas aeruginosa according to Brown. Brown continued saying These discoveries were found to be effective in the lab and in mice, but more work is needed to offset potential side effects and ensure human safety. Brown adds that his lab is continuing to test more compounds as well. “One of the things we want to pursue further is why this is working so well,” he said. The study was supported by grants from the Canadian Institutes of Health Research, the National Sciences and Engineering Research Council and Cystic Fibrosis Canada, among others. http://bit.ly/2m3hZq2   In our final story , a group of Canadian Stem Cell & Regenerative Medicine Leaders have announced that they are Joining Forces to Advance Canada’s Position in the Field, with the launch late last week of a new national group called the Regenerative Medicine Alliance of Canada. The founding members include: CCRM; The Centre for Drug Research and Development (CDRD); CellCan; Medicine by Design; Ontario Institute for Regenerative Medicine; ThéCell; Canadian Stem Cell Foundation, and Stem Cell Network. The goal of this new Regenerative Medicine Alliance of Canada or (RMAC) will be to advance Canada’s stem cell science and regenerative medicine sector by aligning national activity in the field. Its members say they plan to work collaboratively to share information and identify strategies that will benefit the growth of Canada’s regenerative medice expertise. The initial concept for this alliance was conceived by members of the regenerative medicine community during a workshop on the state of regenerative medicine in Canada. The workshop was held by the Council of Canadian Academies in 2016. Their newly released report notes the importance of strategic coordination amongst the stem cell and regenerative medicine community. Bolstering and aligning programs, training, policy and communication will also be central themes addressed by RMAC. According to the Alliance, With the global market for regenerative medicine iexpected to exceed US$49 billion by 2021, the need to keep Canada well positioned to compete by moving its innovative treatments and therapies out of the lab and into the clinic has never been greater. Countries around the world, including the U.S., Japan and the U.K., have already taken bold steps through investment and regulatory modernization to capture a significant piece of the market. RMAC will serve as a mechanism to support strategic activity across the regenerative medicine sector in Canada. The RMAC will act voluntary organization comprised of national, provincial and regional organizations. All members have mandates relevant to stem cell research and/or regenerative medicine. Well that wraps up another episode of the Biotechnology Focus Podcast. We hope you enjoyed it. Be sure to let us know what you think, and we’re also always looking for story ideas and suggestions for future shows, and of course we’d love to hear from you as well, simply reach out to us via twitter @biotechfocus, or by email at the following email address press@promotivemedia.ca. And

What is pornography? There is a lot of talk about its effects on individuals and society, but what exactly makes something pornographic?In this episode, Dr. Taylor Kohut joins AuntieSocial to discuss the Porn Genome Project, which sets out to answer that question. For additional information please visit:http://www.stereo-typed.com/ep14/Porn Genome Project on Indiegogohttp://www.indiegogo.com/projects/porn-genome-project-app-science#/Stereo-Typed on Patreonhttp://www.patreon.com/stereotyped

Georgia State University's Charles Hankla on why trade deals are dying. Richard Hass from Philadelphia University explains the psychology of song plagiarism. Patrick Madden from BYU shares his new Essay Genome Project. MIT's Tami Lieberman on drug resistant bacteria. Mary Politi of Washington University explains why low-income smokers are more likely to quit insurance instead of cigarettes. BYU's Oliver Johnson, Dallin Frandsen, and Spencer Rogers go over manufacturing better materials on the microlevel.

This week we have something a little special for you: a deep dive into Artsy’s Art Genome Project, the system that is used to classify the artworks on Artsy. We discuss some of the exciting and surprising trends in contemporary art that the Genome Project has unearthed, before expanding on our previous discussion centered around the pitfalls of labeling artists—and explore the underappreciated history of the pigments used to create art through the ages. Read more: https://www.artsy.net/article/artsy-editorial-the-artsy-podcast-no-11-so-what-is-the-art-genome-project-anyway

The 100,000 Genome Project aims to sequence the DNA of 100,000 patients. One of those patients is four-year-old Georgia Walburn-Green. Her symptoms did not fit into any known disease category. Prof Maria Bitner-Glindzicz at University College London used early results from the 100,000 Genome project to diagnose Georgia's condition. Roland Pease reports on helping stem cells survive using a kind of 'blood paint'. By dipping the cells in myoglobin, researchers at Bristol University have found a way to improve both the vigour and survival of stem cells. The expanding nuclear programme in the UK will continue to produce nuclear waste - in lower volumes than previously produced, but we already have a large stockpile that has already been produced over the last 50 years. Countries around the world are facing a similar challenge: What do we do with the waste? Dame Sue Ion, engineer and expert advisor to the nuclear industry, discusses common practices and alternative approaches to nuclear waste disposal. Many dinosaurs had big, iconic features like frills, plates, horns and spines that may have been tools or weapons, but Dr David Hone's (Queen Mary University of London) research on the small, herbivorous dinosaur Protoceratops andrewsi reveals that they may also serve another purpose in the dinosaur society: sexual selection. Could these features be what attracts one dinosaur to another? Producer: Deborah Cohen and Jen Whyntie Assistant Producer: Julia Lorke.

Scott (the Infant who brought you Any Opposed) explains the Mormon Genome Project. Did Joseph Smith Father any children with any of his polygamous wives? You can help answer that question. Take a listen. Check out The Mormon Genome Project for more information.

In this episode of Epilepsy.com's Hallway Conversations, Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews Daniel Lowenstein, MD, Professor of Neurology, University of California San Francisco, and Kristen Schardein, Recruitment Director, about the Epilepsy Phenome Genome Project (EPGP).

The '1000 Genome Project', 'Billion Dollar Human Proteome', viral killing proteins, and capturing anti-matter. Hosts: Marc Pelletier, Vincent Racaniello, Ph.D, and Andre Nantel, Ph.D Co-Host: George Farr, Ph.D. Guest: Mark Gerstein We invite you to read, add to, and amend our show notes. Comments and suggestions on Futures in Biotech. Sponsored by: Synergy 1. Also thanks to Phil Pelletier and Will Hall for the great themes. Thanks to CacheFly for providing the bandwidth for this netcast.

A mix of four-on-the-floor beats with, disco infuences, beats made for dancing, straight drum beats, synth riffs, heavily affected synth, synth swoops, thickly layered productions and highly synth sonority typical to the mixes and subgenre of TGP. Long Live Trance!!! -DJ Evee aka Trance Genome Project-

A mix of four-on-the-floor beats with, disco infuences, beats made for dancing, straight drum beats, synth riffs, heavily affected synth, synth swoops, thickly layered productions and highly synth sonority typical to the mixes and subgenre of TGP. Long Live Trance!!! -DJ Evee aka Trance Genome Project-

A mix of four-on-the-floor beats with, disco infuences, beats made for dancing, straight drum beats, synth riffs, heavily affected synth, synth swoops, thickly layered productions and highly synth sonority typical to the mixes and subgenre of TGP. Long Live Trance!!! -DJ Evee aka Trance Genome Project-

A mix of four-on-the-floor beats with, disco infuences, beats made for dancing, straight drum beats, synth riffs, heavily affected synth, synth swoops, thickly layered productions and highly synth sonority typical to the mixes and subgenre of TGP. Long Live Trance!!! -DJ Evee aka Trance Genome Project-

Dr. Steven Schachter interviews Dr. Daniel Lowenstein, Professor and Vice-Chairman of the UCSF Department of Neurology about the largest research study ever created to understand how genetics influences epilepsy. The Epilepsy Phenome/Genome Project is a collaborative effort among some of the country’s leading epileptologists and the National Institutes of Health to investigate the causes of epilepsy and the differences in how people respond to anti-seizure medication.