Podcasts about ucl institute

The creation of a landmark gene editing drug used to treat a baby with a rare genetic mutation which could help transform personalized medicine. Blood tests showed baby KJ had sky-high levels of ammonia, a toxic substance the body usually expels. The root cause was his genes - or more particularly a specific gene mutation. The race was on to try and treat him before his condition took a firm hold. His doctors came up with a radical solution - for the first time ever, they designed and applied a gene-editing drug in record time, specifically for him. Have we seen breakthrough in preventing genetic diseases? With Fyodor Urnov, a professor in the Molecular and Cell Biology Department at the University of California, Virginijus Šikšnys professor at the Life Science Center of Vilnius University, Waseem Qasim from the UCL Institute of Child Health in Great Ormond Street Hospital in London and Jennifer Doudna, Professor, University of California, Berkeley and founder of the Innovative Genomics Institute. Presented by Tanya Beckett. Produced by Bob Howard. Researched by Mauve Schaffer Edited by Tara McDermott.

Tom Jenson, a postdoc researcher at UCL Institute of Neurology, chats about his research on astrocytes and their role in neuronal communication. He explains the differences between astrocytes and neurons, the challenges of using human brain tissue for research, and shares preliminary results from his studies on calcium signaling in astrocytes! The conversation also touches on the creative aspects of scientific research and the beauty of visualising brain cells through microscopy. ------------------------------------------

Last week, President Trump signed a memorandum calling for reciprocal tariffs on countries that charge fees on US exports and called his 25% tariff order on all steel and aluminum imports “the beginning of making America rich again.” But is it? We turn to three brilliant economists for their takes (and disagreements) on the real impact Trumponomics will have on the U.S. economy. Kara leads a spirited and insightful conversation about industrial policy, the efficacy of Trump's tariffs, how worried we should really be about the U.S. 's trade deficit, the odds of an AI bubble and bail out, and, of course, DOGE. Featuring:  Oren Cass, the founder and chief economist of American Compass, a conservative think tank, and a contributing opinion writer for the Financial Times and the New York Times.  Paul Krugman, a Nobel Prize-winning economist who writes a newsletter on Substack, teaches at the City University of New York Graduate Center, and recently retired his New York Times Opinion column after writing it from 2000 to 2025. And Mariana Mazzucato, a professor of economics at University College London, where she is Founding Director of the UCL Institute for Innovation & Public Purpose and author of the hugely influential book, The Entrepreneurial State. This episode was recorded on Monday, February 10. Questions? Comments? Email us at on@voxmedia.com or find us on Instagram and TikTok @onwithkaraswisher Learn more about your ad choices. Visit podcastchoices.com/adchoices

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.

For 25 år siden blev Noreena Hertz en international venstrefløjsstjerne med sin kritik af globaliseringen. I denne uges langsomme samtale ser hun tilbage og forklarer, hvorfor det blev højrefløjen, som vandt kampen om de ensomme og oversetes hjerter --- Da samfundene blev lukket ned i 2020, sad Noreena Hertz og skrev på en bog om ensomhed som globalt problem. Allerede dengang var den i dag 58-årige forfatter, økonom og professor ved UCL Institute for Global Prosperity ved University College London en intellektuel venstrefløjsstjerne. I 2001 havde hun udgivet bogen Den Tavse Magtovertagelse: Kapitalisme og demokratiets død, som gjorde hende til en usædvanlig talskvinde for den globaliseringskritiske bevægelse, der omkring århundredskiftet manifesterede sig ved spektakulære demonstrationer mod verdensøkonomiske topmøder og mobilisering af en ny kapitalismekritik. Men i 2020 skrev Hertz altså en opfølger til Den Tavse Magtovertagelse, som handlede om ensomhed. Ikke kun som et eksistentielt eller kulturelt fænomen, men som et resultat af årtiets politiske beslutninger. »Jeg konstaterede, at folk var blevet mere isolerede, ensomme og fremmedgjorte,« siger hun i denne uges udgave af langsomme samtaler med Rune Lykkeberg. Når Hertz lavede empiriske studier og talte med folk i forskellige lande, der følte sig ensomme, brugte de vendinger, som at »de ikke blev set«, og »ingen hørte deres stemme«. De tendenser, som hun havde studeret i flere år og sad og skrev om, blev radikaliserede af pandemien – og grebet politisk af højrefløjen: »Det var genialt af højrefløjen, at de så det her. De identificerede efter min opfattelse denne efterspørgsel hos vælgere, de tilpassede og målrettede deres strategier, så de kunne tale til det,« forklarer Hertz. I løbet af samtalen med Rune Lykkeberg tager Noreena Hertz hele turen tilbage til, hvad der skete omkring årtusindeskiftet og frem til i dag: Hvorfor mistede venstrefløjen appellen til højrefløjen? Hvad kan venstrefløjen lære af folk som Meloni, Le Pen og Trump? Og hvorfor er Hertz på trods af de senere års udvikling alligevel relativt håbefuld på både venstrefløjen, de unge progressive og klimaets vegne?

Considering recent cases and societal issues, how can built environment practitioners influence policies for women's safety in cities? With Professor Priti Parikh, Director of Bartlett School of Sustainable Construction, Dr Hanna Baumann, UCL Institute for Global Prosperity and Dr Margarita Garfias Royo, Deputy Director of the Engineering for International Development Centre.  Transcription link: https://bartlett-review.ucl.ac.uk/podcast-planning-urban-environments-for-womens-safety/index.html Date of episode recording: 2024-12-12T00:00:00Z Duration: 00:33:57 Language of episode: English Presenter:Professor Priti Parikh Guests: Dr Hanna Baumann; Dr Margarita Garfias Royo Producer: Adam Batstone, Chizoba Onyiuke and Victoria Howard

Today we are continuing our discussion on gene therapy, with Dr Rajvinder Karda, hosted by Olivia. Raj is both a researcher and professor at the UCL Institute for Women's Health, with her role as an associate professor of Gene Therapy, as well as leading a team of research focussing on developing pre-clinical gene therapy and RNA editing treatments for childhood epilepsy, including Dravet Syndrome. Listen in to learn more about Raj's work in the field of gene therapy, as she explains more about how gene therapies are being researched and developed for pre-clinical trials, including in her lab where her team is working on the development of gene therapies for treating Dravet Syndrome. Date of episode recording: 2025-01-22T00:00:00Z Duration: 00:30:16 Language of episode: English Presenter:Olivia Moir Guests: Dr Rajvinder Karda Producer: Olivia, UCL Institute for Women's Health, UCL Faculty of Population Health Sciences

Peter Moss is Emeritus Professor of Early Childhood Provision at the Thomas Coram Research Unit, UCL Institute of Education. Professor Moss discusses the failings of the current early years education system and how a radical transformation is required. His recent book is available free to download here: https://discovery.ucl.ac.uk/id/eprint/10191508/

"[Cities are] multiple systems, threaded together, nested inside each other, interacting with each other in different complex ways." Are you interested in the city as tangle of systems and flows? What do you think is the connection among nature, technology and culture? How can we create real smart cities? Interview with Dan Hill, the Director of the Melbourne School of Design at the University of Melbourne. We talk about his vision for the future of cities, hope and optimism, engineering and design, scale of cities, and many more. Dan Hill is a designer, urbanist, and educator with extensive experience leading across multiple sectors. Dan is currently the Director of the Melbourne School of Design at the University of Melbourne and a professor of the built environment. His career has spanned roles such as Director of Strategic Design at Vinnova, Sweden's innovation agency, the Finnish innovation fund SITRA, the global design firm Arup, and the BBC. Dan has worked on urban development and design projects globally, collaborating with clients like Google, Lendlease, British Library, Victoria & Albert Museum, and City of Melbourne. He's also a founder board member of the Council on Urban Initiatives and UCL Institute for Innovation and Public Purpose, and former professor at the Oslo School of Architecture and Design. Dan is also an accomplished author, known for works like “Dark Matter & Trojan Horses” and “Designing Missions.” Find out more about Dan through these links: Dan Hill on LinkedIn; Dan Hill on Medium; Dan Hill at the Melbourne School of Design; Dan Hill on Threads.net; Dan Hill on Bluesky; Council on Urban Initiatives website; Council on Urban Initiatives youtube channel; Modern housing: an environmental commmon good - article by Dan Hill at the Council on Urban Initiatives; Dan Hill on Strategic Design - youtube video; Shaping urban futures - discussion with Dan Hill and Diana Rodríguez Franco about Bogotá's Care System Connecting episodes you might be interested in: No.171 - Interview with Nicole Garofano about circular economy No.190 - Interview with Adrian McGregor about cities as part of nature No.246 - Interview with Boyd Cohen about the 15-minute city No.260 - Interview with Haydn Read about systems thinking What wast the most interesting part for you? What questions did arise for you? Let me know on Twitter ⁠⁠⁠⁠⁠⁠⁠⁠⁠@WTF4Cities⁠⁠⁠⁠⁠⁠⁠⁠⁠ or on the ⁠⁠⁠⁠⁠⁠⁠⁠⁠wtf4cities.com⁠⁠⁠⁠⁠⁠⁠⁠⁠ website where the ⁠⁠⁠⁠⁠⁠⁠⁠⁠shownotes⁠⁠⁠⁠⁠⁠⁠⁠⁠ are also available. I hope this was an interesting episode for you and thanks for tuning in. Music by ⁠⁠⁠⁠⁠⁠⁠⁠⁠Lesfm ⁠⁠⁠⁠⁠⁠⁠⁠⁠from ⁠⁠⁠⁠⁠⁠⁠⁠⁠Pixabay⁠

Send us your feedbackFor this episode of the My Macular and Me podcast, we are revisiting one of talks from Dr Matteo Rizzi, research fellow at UCL Institute of Ophthalmology, as he speaks on Stargardt disease and how it affects vision, as well as the future of gene therapy.Dr Matteo Rizzi joined the My Macular and Me podcast with Dr Omar Mahroo earlier this year to discuss photopsia and photophobia in patients with Stargardt disease. If you would like to find out more on this topic, you can listen here.For more information on registration, please visit the Macular Society website. Or if you have any questions, please get in touch at help@macularsociety.orgThe Macular Society has been supporting people with macular conditions for over 30 years. The right information and support can help people overcome their worries and retain their independence. We provide free information and support to those with macular disease, along with their family and friends. If you or a family member need advice or support, please make sure to reach out. No one has to face macular disease alone. Please call us on 0300 3030 111.

While paediatric onset multiple sclerosis is relatively rare, it presents unique challenges. Extensive research efforts are taking place around the world to better understand the disease mechanism of paediatric MS and the similarities and differences that exist with adult onset MS to help determine the best treatment options for children and adolescents. In this episode, host Brett Drummond of MSTranslate explores the topic with Dr. Yael Hacohen of Great Ormond Street Hospital for Children and UCL Institute of Neurology in the UK and Dr. Thaís Armangué of SJD Barcelona Children's Hospital in Spain.

Join co hosts Graham Stanley and James Radburn for this one off special delving into the lives of teachers who have transitioned from the classroom into the world of edtech. Find out more about Toddle by visiting toddleapp.com. They are joined by two guests... Deepanshu Arora -  Deepanshu is the Co-founder and CEO of Toddle, an AI-powered teaching & learning platform loved by 2,000+ progressive schools around the world. An engineer by background and an educator by passion, he believes that technology has only one role to play in education - that of helping teachers do better what they do best. Deepanshu also leads Toddler's Den, a network of Reggio Inspired Preschools. Prior to this, he worked with McKinsey & Company and studied at the Indian Institute of Technology. Matt Fletcher - Matt Fletcher holds a degree in English Literature from the University of Sussex and completed his PGCE in Secondary Education at the UCL Institute of Education. As a fellow of the Inspiring Teachers programme, he spent time in Uganda last year, working with teachers in low-resource contexts and helping design a peer-coaching programme. Prior to joining Toddle, Matt taught English at The Harrodian School in Barnes. Now, Matt leads regional growth for Toddle in the UK and is driven by his passion for integrating technology to support teachers, ease administrative workloads and enhance learning outcomes. His aim is to empower teachers with innovative digital tools that enable them to thrive in today's evolving educational landscape.

On this episode of Mind the Gap, Jon Hutchinson and Emma Turner are joined by Leora Cruddas, CEO of the Confederation of School Trusts. Leora shares her journey from teaching in apartheid-era South Africa to becoming a leading voice in educational policy and academy trust leadership. Together, they explore the evolution of academy trusts, the importance of stable leadership, and the challenges of teacher recruitment and retention. Leora highlights the role of trusts as civic anchors, emphasizing their capacity to foster collaboration and serve as pillars of community well-being. She says, "The point at which we start making decisions on behalf of our children from the vested interests of adults is the point that our education system will start to fail." Reflecting on her role, Leora underscores the need for educational leaders to balance stability with innovation, as well as the need for trust leaders to tell adopt a narrative around trusts that focuses on the moral purpose of education. The discussion concludes with a compelling vision for the future of education: building systems that prioritize public trust, equity, and human flourishing. Leora Cruddas is the founding Chief Executive of the Confederation of School Trusts – the national organisation and sector body for school trusts in England. She has advised successive governments and sits on several Department for Education advisory bodies. She was recently the vice chair of the Head Teacher Standards Review Group, a member of the external advisory group for the Schools White Paper, SEND National Implementation Board and the Regulatory and Commissioning Review. Prior to founding CST, she was Director of Policy and Public Relations for the Association of School and College Leaders. Leora has six years of experience as a director of education in two London local authorities. She is a visiting professor at UCL Institute of Education, and was made a CBE in the 2022 New Year's Honours. Follow her on X @LeoraCruddas. Emma Turner FCCT is a school improvement advisor, education consultant, trainer and author. She has almost three decades of primary teaching, headship and leadership experience across the sector, working and leading in both MATs and LAs. She works nationally and internationally on school improvement including at single school level and at scale. She has a particular interest in research informed practice in the primary phase, early career development, and CPD design. Follow Emma on X ⁠⁠⁠⁠⁠⁠⁠⁠⁠@emma_turner75⁠⁠⁠⁠⁠⁠⁠⁠⁠. Jon Hutchinson is a former assistant headteacher of Reach Academy Feltham and is now a Director at the Reach Foundation. He has taught across primary and secondary and HE. In his spare time, Jon runs ⁠⁠www.meno.acacdemy⁠⁠, a platform with free videos to support primary teachers to build their subject knowledge. Follow Jon on X ⁠⁠⁠⁠@jon_hutchinson_⁠⁠ or Bluesky ⁠⁠@jonhutchinson.bksy.social⁠. This podcast is produced by Haringey Education Partnership. Find out more at ⁠⁠⁠⁠⁠⁠⁠⁠https://haringeyeducationpartnership.co.uk/

The Education Brief: Saturday 23 November 2024 - Top stories include: A new Teaching Commission aims to address the teacher recruitment and retention crisis. Ambition Institute, Education Development Trust, Teach First, and UCL Institute of Education secured contracts to deliver the Early Career Framework from 2025. A report on the Behaviour Hubs programme reveals contrasting outcomes. The government has commissioned research into the Safety Valve scheme's effects on children and families. This week's deep dive:  New Data on Suspensions and Exclusions We'll also tell you what's happening at HEP this week and what we've been watching, listening to, and reading! Watching - https://fairnessfoundation.com/posts/great-britain Listening - https://podcasts.apple.com/gb/podcast/the-wellbeing-equation-why-happy-staff-stay-with/id1608692574?i=1000673251399 Reading - https://www.mqmentalhealth.org/mental-health-and-the-internet/ AI Tool - https://www.blooket.com/ Music by Slo Pony

Hear our innovative research grantees discuss their projects and the exciting progress they are making, and see how your gift can make a real impact this Big Give. Our panel includes Professor Majlinda Lako: Professor Majlinda Lako is the co-director of regenerative medicine stem cells and transplantation at Newcastle University. Professor Lako is a member of the Biosciences Institute and her work contributes to the Regenerative Medicine, Stem Cells and Transplantation research Theme. She is also part of the Neuroscience NUCoRE. Professor Jacqueline van der Spuy: Jacqueline van der Spuy is a Professor of Molecular and Cellular Biology at the UCL Institute of Ophthalmology, which she joined as a Wellcome Trust Travelling Research Fellow in 2000. Jacqueline's research aims to understand the molecular basis of and develop treatments for inherited retinal dystrophies (IRDs). Professor van der Spuy is currently supervising PhD student Gabriel, whose project explores the potential use of prime editing as a route to treating Stargardt disease. Elena Piotter, DPhil Student and Retina UK / Macular Society Scholar: Elena completed her Bachelors in International Relations (BA) and Global Disease Biology (BSc) at the University of California, Davis. She is currently pursuing her Masters in Molecular Biology at the Reijksuniversiteit Groningen, for which she is undertaking a research project as an Honorary Academic Visitor in Professor Robert MacLaren's lab. Her project focuses on utilizing CRISPR-Cas9 in addressing degenerative eye disease.

Watch the Q&A session here:  https://youtu.be/leCxdECjyDMReducing health inequalities is a matter of social justice. Strategies must address the social gradient in health, and efforts should extend beyond healthcare to address the conditions in which people are born, grow, live, work, and age. This lecture argues economic circumstances, while important, are not the sole drivers of health inequalities, and closing the health gap will take evidence-based action across the whole of society.This lecture was recorded by Michael Marmot  on 6th November 2024 at Barnard's Inn Hall, London.Sir Michael Marmot has been Professor of Epidemiology at University College London since 1985, and is Director of the UCL Institute of Health Equity. He served as President of the British Medical Association (BMA) in 2010-2011, and as President of the World Medical Association in 2015.  He is President of the Asthma + Lung UK.  He is a Fellow of the Academy of Medical Sciences and Honorary Fellow of the American College of Epidemiology and of the Faculty of Public Health; an Honorary Fellow of the British Academy; and of the Royal Colleges of Obstetrics and Gynaecology, Psychiatry, Paediatrics and Child Health, and General Practitioners.The transcript of the lecture is available from the Gresham College website: https://www.gresham.ac.uk/watch-now/health-gapGresham College has offered free public lectures for over 400 years, thanks to the generosity of our supporters. There are currently over 2,500 lectures free to access. We believe that everyone should have the opportunity to learn from some of the greatest minds. To support Gresham's mission, please consider making a donation: https://gresham.ac.uk/support/Website:  https://gresham.ac.ukTwitter:  https://twitter.com/greshamcollegeFacebook: https://facebook.com/greshamcollegeInstagram: https://instagram.com/greshamcollegeSupport the show

How can NHS backlogs be tackled and waiting times improved? What are the prospects for adult social care reform in this parliament? How can government ensure health and care services have sufficient workforces? Do health and care services have sufficient funding and is existing funding used effectively? To what extent can and should health services focus more on prevention? And to what extent do the government's proposals address these challenges? Dr Becks Fisher, Director of Research and Policy at Nuffield Trust Professor Naomi Fulop, Professor of Health Care Organisation and Management at the UCL Institute of Epidemiology and Health Care Preet Gill MP, former Shadow Minister for Primary Care and Public Health Dame Una O'Brien, former Permanent Secretary in the Department of Health This session was chaired by Stuart Hoddinott, Senior Researcher at the Institute for Government. This event was part of the IfG's public services conference, kindly supported by UCL.

On 30 October, the new government announced spending plans for 2025/26, with a spending review covering 2025/26 to 2027/28 due to be published in the spring. What are the implications of these spending plans for public service performance in 2025/26? What options should the spending review consider for raising revenue and boosting productivity? How can the government improve public services when funding is tight? Rupert Harrison, former Chief of Staff to George Osborne and Chair of the UK's Council of Economic Advisors (2010–15) Paul Johnson, Director of the Institute for Fiscal Studies Professor Henrietta Moore, Founder and Director of the UCL Institute for Global Prosperity Rachel Sylvester, political columnist at The Times and Chair of the Times Health Commission This session will be chaired by Nick Davies, Programme Director at the Institute for Government. This event was part of the IfG's public services conference, kindly supported by UCL.

How can NHS backlogs be tackled and waiting times improved? What are the prospects for adult social care reform in this parliament? How can government ensure health and care services have sufficient workforces? Do health and care services have sufficient funding and is existing funding used effectively? To what extent can and should health services focus more on prevention? And to what extent do the government's proposals address these challenges?   Dr Becks Fisher, Director of Research and Policy at Nuffield Trust Professor Naomi Fulop, Professor of Health Care Organisation and Management at the UCL Institute of Epidemiology and Health Care  Preet Gill MP, former Shadow Minister for Primary Care and Public Health Dame Una O'Brien, former Permanent Secretary in the Department of Health    This session was chaired by Stuart Hoddinott, Senior Researcher at the Institute for Government. Learn more about your ad choices. Visit podcastchoices.com/adchoices

Professor Monica Lakhanpaul and Professor Priti Parikh are joined by Professor Catalina Turcu, Professor of Sustainable Built Environment, Bartlett School of Planning and Professor Ilan Kelman, Professor of Disasters and Health in the UCL Institute for Risk and Disaster Reduction. Today they're discussing the relationship between the Sustainable Development Goals and climate change. Goal 13 calls for urgent action to combat climate change and its impacts, and many people have argued that tackling climate change should be the highest priority of the goals because of its impact on all of the other targets. Date of episode recording: 2024-07-23T00:00:00Z Duration: 00:44:36 Language of episode: English Presenter:Professor Monica Lakhanpaul, Professor Priti Parikh Guests: Professor Catalina Turcu, Professor Ilan Kelman Producer: Front Ear

What does culture mean to you? Is it the art we create, the traditions we carry, or the values we hold dear? In this mini episode of Our World, Connected, Christine Wilson, Director of Research and Insight at the British Council, delves deeper into the multifaceted nature of culture and its incredible power to connect, inspire, and heal.  Christine revisits some of the most impactful conversations from the first season, featuring insights from Alexandra Xanthaki, UN Special Rapporteur on Cultural Rights, Scott Orr, a data scientist from the UCL Institute of Sustainable Heritage, David Watson, the Executive Director of Audiences and Media at National Museums Liverpool, and Hala Nur, a British Council colleague working in Sudan. Together, they discuss how culture transcends borders, linking people through shared values, language, art, and traditions. From the Eurovision Song Contest's unifying magic to the profound connection between culture and the environment, we unpack how culture shapes our world and fosters a deep sense of belonging. This is the first of a 3-part mini-series we're putting together as we prepare for Season 2 of Our World, Connected, coming this January. Episodes Featured: Is culture the missing key to global progress? United by music: Lessons from Eurovision 2023 Climate Change and Cultural Heritage: Protecting our Past and Future Culture and Education: Seeds of Hope in Times of Conflict Follow British Council Research and Insight: Newsletter – https://www.britishcouncil.org/research-insight/subscribe  Twitter – https://twitter.com/InsightBritish  Website - https://www.britishcouncil.org/research-insight 

Catherine Gray, the host of Invest In Her, interviews Dr Kristen Weatherby,  the founder of Breakthrough Labs, an accelerator and community supporting female tech founders seeking early-stage funding. Breakthrough Labs addresses the unique challenges that women encounter on their entrepreneurship journeys and offers research-backed support to ensure that more female-founded start-ups thrive. The new Breakthrough Labs online community supports women entrepreneurs globally by providing them access to the learning, connections, and resources they need to help their businesses thrive. Dr Weatherby is also a Scout for Ada Ventures, an impact-driven VC committed to funding diverse founders in the UK. She has a PhD in education technology from the UCL Institute of Education, and a Masters in Education from the University of Michigan. Her 25-year career has included leadership roles in some of the largest global public and private sector players in education, technology, policy, and research, including Microsoft, the OECD, and University College London.    https://www.breakthroughlabs.net/ www.sheangelinvestors.com    Follow Us On Social Facebook | Instagram | Twitter | LinkedIn  

This week, Jonathan is joined by Mandeep Sagoo, Professor of Ophthalmology and Ocular Oncology, UCL Institute of Ophthalmology, London, UK. The pair explore ocular oncology and Mandeep's groundbreaking work developing a digitally engineered 3D printed ocular prosthetic.   Use the following timestamps to navigate this episode:  (00:00)-Introduction (04:17)-Mandeep's journey into ophthalmology (08:06)-Pioneering work in Philadelphia, USA (11:15)-Lessons from the US healthcare system (13:30)-Churchill's Fellow Award (16:25)-Naevi and the role of ocular coherence tomography (20:00)-How to diagnose malignancies (30:38)-Creating prosthetic eyes following enucleation (34:06)-3D printed prosthetics (39:28)-Retinoblastoma (42:45)-Innovations in molecular medicine (44:42)-Three wishes for ocular oncology  

Welcome to Series 5! In this first episode, following the recent Labour party conference, our hosts Professor Mark Maslin and Dr Simon Chin-Yee discuss the UK government's plan to create ‘Great British energy'. The (not so?) ambitious programme aims to make Britain a clean energy superpower to bolster energy security and achieve its net zero carbon emissions target by 2050. But how impactful actually are these policies? With UCL's Professor of Energy Policy Jim Watson, Emma Fletcher from Octopus Energy, and Dave Powell from Climate Outreach, we assess whether this is a genuine step towards green energy or just political rhetoric. Our experts also look more broadly at green initiatives, and whether they really can lower your bills. Date of episode recording: Monday 16th and 17th September 2024 Duration: 49.55 minutes Language of episode: English  Presenter: Professor Mark Maslin and Dr Simon Chin-Yee  Guests: Emma Fletcher (Low Carbon Homes Director of Octopus Energy) Dave Powell (Senior Advocacy Manager at Climate Outreach) Jim Watson (Professor of Energy Policy and Director of UCL Institute of Sustainable Resources within the Faculty of the Built Environment) Producer: Adam Batstone

Jeannette is joined by Professor Anthony Khawaja, a top eye specialist at Moorfields, focusing on the topic of glaucoma. Professor Kawaja shares his journey to becoming a leading expert in the field of ophthalmology, highlighting the importance of early detection and treatment of glaucoma. He discusses the impact of genetics, lifestyle choices, and advancements in artificial intelligence on eye health KEY TAKEAWAYS Anthony's innovative approach to combining medicine and surgery in the field of ophthalmology, particularly in glaucoma, showcases his commitment to finding new solutions. Professor Khawaja's groundbreaking genetic research in glaucoma has led to significant advancements in understanding the disease and potential treatments. The emphasis on making a difference and impacting society through his work is a driving force for Professor Kawaja, motivating him to push boundaries and challenge the status quo. The importance of finding a balance between work and personal life, as well as the support of a partner like Claire, is crucial for managing the emotional toll of challenging cases and maintaining fulfilment in one's career. BEST MOMENTS "It's moved so quickly. I remember when I first started ophthalmology for some inherited, I did a clinic, you only get these clinics at Northfields where everybody has these rare genetic dystrophies" "In some cases you're dealing with death, you're dealing with potential blindness in your field."  "Glaucoma is what commonest causes of blindness. In the UK and in developed countries it's usually the second commonest cause after a condition called age-related macular degeneration."   This is the perfect time to get focused on what YOU want to really achieve in your business, career, and life. It's never too late to be BRAVE and BOLD and unlock your inner BRILLIANT. Visit our new website https://brave-bold-brilliant.com/ - there you'll find a library of FREE resources and downloadable guides and e-books to help you along your journey. If you'd like to jump on a free mentoring session just DM Jeannette at info@brave-bold-brilliant.com. VALUABLE RESOURCES Brave Bold Brilliant - https://brave-bold-brilliant.com/ Brave, Bold, Brilliant podcast series - https://podcasts.apple.com/gb/podcast/brave-bold-brilliant-podcast/id1524278970    ABOUT THE GUEST Professor Anthony Khawaja leads a data science and genomics research team at the UCL Institute of Ophthalmology and Moorfields Eye Hospital, aiming to improve the care of patients with glaucoma and other common eye diseases. He is an Honorary Consultant Ophthalmic Surgeon practicing at Moorfields Eye Hospital, where he specialises in the medical and surgical care of patients with glaucoma and cataract. Anthony completed his medical training at the University of Cambridge and University College London, and his ophthalmic residency and glaucoma fellowship training at Moorfields Eye Hospital. His research training began with a Wellcome Trust funded PhD programme at the University of Cambridge, including a Masters in Epidemiology for which he won the Nick Day Prize. He was also awarded the Berkeley Fellowship which supported a period at Harvard Medical School. Anthony is currently a UK Research & Innovation Future Leaders Fellow and a Lister Institute Fellow. He holds several leadership positions including: Director of the European Society of Ophthalmology Leadership Development Programme, President of the European Eye Epidemiology Consortium, Chair of the European Glaucoma Society Screening Task Force, Chair of the Royal College of Ophthalmologists Informatics and Audit Committee, Chair of the UK Glaucoma Genetics Consortium, Chair of the UK Glaucoma Real-World Data Consortium. ABOUT THE HOST Jeannette Linfoot is a highly regarded senior executive, property investor, board advisor, and business mentor with over 30 years of global professional business experience across the travel, leisure, hospitality, and property sectors. Having bought, ran, and sold businesses all over the world, Jeannette now has a portfolio of her own businesses and also advises and mentors other business leaders to drive forward their strategies as well as their own personal development. Jeannette is a down-to-earth leader, a passionate champion for diversity & inclusion, and a huge advocate of nurturing talent so every person can unleash their full potential and live their dreams. CONTACT THE HOST Jeannette's linktree - https://linktr.ee/JLinfoot https://www.jeannettelinfootassociates.com/ YOUTUBE - https://www.youtube.com/@braveboldbrilliant LinkedIn - https://uk.linkedin.com/in/jeannettelinfoot Facebook - https://www.facebook.com/jeannette.linfoot/ Instagram - https://www.instagram.com/jeannette.linfoot/ Tiktok - https://www.tiktok.com/@jeannette.linfoot Podcast Description Jeannette Linfoot talks to incredible people about their experiences of being Brave, Bold & Brilliant, which have allowed them to unleash their full potential in business, their careers, and life in general. From the boardroom tables of ‘big' international businesses to the dining room tables of entrepreneurial start-ups, how to overcome challenges, embrace opportunities and take risks, whilst staying ‘true' to yourself is the order of the day.Travel, Bold, Brilliant, business, growth, scale, marketing, investment, investing, entrepreneurship, coach, consultant, mindset, six figures, seven figures, travel, industry, ROI, B2B, inspirational: https://linktr.ee/JLinfoot

One in six people are said to have ‘very poor literacy skills' according to the National Literacy Trust. As a country, we value Literature, high quality research skills and further education, yet our values are not reaching all sections of our society. Looking to challenge this is Professor Anna Vignoles, her past research focused on issues of equity and value in education, particularly the relationship between educational achievement and social mobility, and the role played by education and skills attainment in the economy and society.   She was Professor of Education and Fellow of Jesus College at the University of Cambridge, Professor of Economics of Education at the UCL Institute of Education and Research Fellow at the London School of Economics Centre for Economic Performance. But now, Professor Vignoles is the Director of the Leverhulme Trust, one of the UK's most prestigious grant-making organisations.  Season 6 of the We Society Podcast from the Academy of Social Sciences continues to tackle the big questions through a social science lens. Throughout this series, you'll be hearing some of the best ideas to shape the way we live. Hosted by journalist and Academy President Will Hutton, we interview some of Britain's top social scientists and public figures from across the globe to explore their evidence-led solutions to society's most pressing problems. Don't want to miss an episode? Follow the We Society on your favourite podcast platform and you can email us on wesociety@acss.org.uk and tell us who we should be speaking to or follow us on X https://twitter.com/AcadSocSciences Find out more about the Academy of Social Sciences here: https://AcSS.org.uk

Ed has departed for government, and Geoff is left as custodian of the archive. As the Labour government makes its first raft of announcements and appointments, we delve into our back catalogue to find the ideas which might have influenced them. In this episode, we look at Rachel Reeves' announcement of the National Wealth Fund. What are public wealth funds? What different forms can they take? What are the potential benefits to our country?We revisit our episode Investment for the People from October 2022. First, we get the beginner's guide from UCL Associate Professor Josh Ryan-Collins. Then we hear from Professor Karin Thorburn about Norway's Sovereign Wealth Fund, which (due to specific historical circumstances) is very different to the one proposed for the UK, but illustrates how a public wealth fund could transform the way we finance Government spending. More infoNorway's Sovereign Wealth FundUCL IIPP Report on Public Wealth FundsGuestsJosh Ryan-Collins, Associate Professor in Economics and Finance, UCL Institute for Innovation and Public Purpose (@jryancollins) (@IIPP_UCL)Karin Thorburn, Professor of Finance, Norwegian School of Economics (@karinsthorburn) (@NHHnor) Hosted on Acast. See acast.com/privacy for more information.

As the sun sets on the longest day of the year, Matthew Sweet talks to an eclectic group of guests about the illusion of time, the summer solstice and the philosophy of comedy. They are: Materials scientist & engineer; Director of the UCL Institute of Making; Author of Stuff Matters and other book Mark Miodownik. Philosopher Emily Herring who is about to publish the first English biography of the french philosopher Henri Bergson who was famous for his theory of time as well as his views on the meaning of comedy. Emily's book Herald of a Restless World: How Henri Bergson Brought Philosophy to the People is out in October. Comedian Rob Newman who made his name with the Mary Whitehouse Experience in the 90s and has presented two series on BBC Radio 4 including Rob Newman's Half-full Philosophy Hour. Also Professor of theoretical physics at Imperial College London Fay Dowker who is an expert in Causal Set Theory and Quantum Relativity. And Author K A Laity will talk about the Women in Magick Conference being held in Birmingham this weekend. Producer: Lisa Jenkinson

Cultural heritage is our link to the past - the stories, traditions, and places we have inherited from previous generations that shape who we are today.  In this episode, host Christine Wilson and Dr Scott Orr, a data scientist at the UCL Institute for Sustainable Heritage, examine how climate change threatens much of this heritage around the world. We also visit Uganda where Barbra Babweteera Mutambi, Director of the Cross-Cultural Foundation of Uganda, is working to preserve ancient sites and support communities affected by climate change. But could cultural heritage also be part of the solution in the fight against climate change? Tune in to discover how we can all play a role in protecting our past to safeguard our future. Dive deeper: British Council Strategic Literature Review: Climate Change Impacts on Cultural Heritage - https://www.britishcouncil.org/research-insight/british-council-strategic-literature-review-climate-change-impacts-cultural Watch this video about the Bakonzo community and Barbra's project in the Rwenzori Mountains, Uganda - https://www.youtube.com/watch?v=NAz2ZGI-R6U Indigenous Knowledge for Climate Action report by the Cross-Cultural Foundation of Uganda - https://tinyurl.com/3fbmhs2u  Learn more about the British Council Cultural Protection Fund - https://cultural-protection-fund.britishcouncil.org/about Follow British Council Research and Insight: Newsletter – https://www.britishcouncil.org/research-insight/subscribe Twitter – https://twitter.com/InsightBritish Website - https://www.britishcouncil.org/research-insight

Jenny and Liz talk to Dr Marysia Tarnowska about their journey into heritage science from a background in chemistry: from molecular bonds to leather deterioration! Jenny also talks to Dr Josep Grau-Bove from the Icon Heritage Science Group about how we can communicate better as both conservators and scientists. Finally, tune in for a review of ‘Soft Paint and the Care of Paintings' from Liz! 00:01:10 From chemistry to museum adventures 00:07:35 A project is born 00:14:53 Scientific papers are an endurance sport 00:17:23 Ways into heritage science 00:19:08 Communicating with conservators 00:24:02 Reaching scientists early on 00:34:28 Museums doing research 00:40:53 Getting involved with scientists 00:43:42 University is where it's at 00:47:13 Don't forget about the Marsh Awards 00:48:00 Patreon shout-out 00:48:37 Interview with Dr Josep Grau-Bove 01:03:11 Review: Soft Paint and the Care of Paintings Show Notes: - Find Marysia on LinkedIn: https://www.linkedin.com/in/marysia-tarnowska/ - Follow Marysia on Twitter: https://twitter.com/supra_marysia - Blog entry by Lucia Burgio at the V&A: https://www.vam.ac.uk/blog/caring-for-our-collections/a-week-in-the-life-of-a-va-heritage-scientist-intro - Red rot (Wikipedia): https://en.wikipedia.org/wiki/Red_rot - Museum of Leathercraft: https://museumofleathercraft.org/ - Leather Conservation Centre: https://leatherconservation.org/ - Institute for Creative Leather Technologies: https://www.northampton.ac.uk/research/research-institutes-and-centres/institute-for-creative-leather-technologies/ - S09E06 Leather: https://thecword.show/2021/06/02/s09e06-leather/ - ICPMS: https://en.wikipedia.org/wiki/Inductively_coupled_plasma_mass_spectrometry - /r/ArtConservation: https://www.reddit.com/r/ArtConservation/ - Icon Heritage Science Group: https://www.icon.org.uk/groups-and-networks/heritage-science.html - European Research Infrastructure for Heritage Science (E-RIHS): https://www.e-rihs.eu/ - MoLab: https://www.iperionhs.eu/molab/ - AHRC (Arts and Humanities Research Council): https://www.ukri.org/councils/ahrc/ - Research at Amgueddfa Cymru: https://museum.wales/research/ - Cultural Heritage Agency of the Netherlands: https://english.cultureelerfgoed.nl/ - Marsh Conservation Awards 2024: https://www.icon.org.uk/impact/the-marsh-conservation-awards.html - Dr Josep Grau-Bove at UCL: https://profiles.ucl.ac.uk/33855-josep-graubove - UCL Institute for Sustainable Heritage: https://www.ucl.ac.uk/bartlett/heritage/ucl-institute-sustainable-heritage - Dr Katherine Curran at UCL: https://profiles.ucl.ac.uk/34356-katherine-curran/ - Soft Paint and the Care of Paintings book: https://archetype.co.uk/our-titles/soft-paint-and-the-care-of-paintings/?id=450 Previous ‘Working With' episodes: - S07E04 Working With Techs: https://thecword.show/2020/05/27/s07e04-working-with-techs/ - S09E01 Working With Front of House: https://thecword.show/2021/03/24/s09e01-working-with-front-of-house/ - S10E02 Working With Curators: https://thecword.show/2021/09/29/s10e02-working-with-curators/ - S11E03 Working With Learning: https://thecword.show/2022/04/20/s11e03-working-with-learning/ - S13E04 Working With Adult Learning: https://thecword.show/2023/05/03/s13e04-working-with-adult-learning/ Support us on Patreon! http://www.patreon.com/thecword Hosted by Liz Hébert, Jenny Mathiasson, and Dr Marysia Tarnowska. Intro and outro music by DDmyzik, used under a Creative Commons Attribution license. Made available under a Creative Commons Attribution-NonCommercial 4.0 International license. A Wooden Dice production, 2024.

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.    

This episode we explore Positive Impact. UCLB is helping to create a new generation of businesses from UCL academics specifically with positive societal impact at their heart. The commercialisation process can be a long road requiring financial, legal, and practical support. Nigel Campbell meets two inventors, Buffy Price Co-founder and COO of Carbon Re, an AI and Climate Tech company spinout from UCL and Cambridge, and Professor Pete Coffey from UCL Institute of Ophthalmology and Founder of Tenpoint Therapeutics; both who are on that journey on how their inventions might improve our future world. We also talk to Dr Anne Lane, CEO of UCLB to find out how UCLB finds the bright ideas which will improve lives, and what it takes to scale to a point where they are having true impact. For more information and transcript: https://www.uclb.com/event-category/podcast/

Michael Marmot, Professor of Epidemiology at University College London, Director of the UCL Institute of Health Equity, and Past President of the World Medical Association, joins Gavin and Jessamy to discuss the centrality of health issues to UK politics, what the upcoming election should be fought on, and the role of equity and equality in UK health outcomes.Continue this conversation on social!Follow us today at...https://twitter.com/thelancethttps://instagram.com/thelancetgrouphttps://facebook.com/thelancetmedicaljournalhttps://linkedIn.com/company/the-lancethttps://youtube.com/thelancettv

Today, we look at rising cases of measles in the UK, and a huge boost to Trump's presidential campaign. As the government launches a catch up campaign for missed MMR Vaccines - we ask why are so many children not being vaccinated? It comes as the West Midlands has seen more than 200 cases of measles since 1st of October. James talks to Preet Kaur Gill, Labour MP for Birmingham Edgbaston, and Helen Bedford, Professor of Children's Health at UCL Institute of Child Health.And in the US, Florida Governor Ron DeSantis has dropped out the race to become the Republican presidential nominee, endorsing Mr Trump. Is the race to challenge Joe Biden effectively over? BBC US Special Correspondent, Katty Kay, brings us the latest from the campaign trail. You can join our Newscast online community here: https://tinyurl.com/newscastcommunityhere Newscast brings you daily analysis of the latest political news stories from the BBC. It was presented by James Cook. It was made by Jack Maclaren with Sam McLaren and Joe Wilkinson. The technical producer was Gareth Jones. The senior news editors are Jonathan Aspinwall and Sam Bonham.

Researchers from University College London have developed an electrocardiographic imaging (ECGI) vest that might help identify individuals at a higher risk of sudden cardiac death. Joining Jonathan to explain how it works is Gaby Captur, Consultant cardiologist in Inherited Heart Muscle Conditions at the Royal Free London NHS Foundation Trust & Senior lecturer at the UCL Institute of Cardiovascular Science.

In this episode you will learn the following:   Childhood development starts in the womb and is critically important until age 2 to set the foundation for who your baby can possibly be.   Your baby is communicating with you through every sound they make. The parents' role is to communicate back.   The games parents play with their newborns each have a learning function to them.   It's important that parents discuss what is priority to them in how they raise their child before having children.   Consistency provides a safe and secure environment for children. Each parent's daily routine is important when there is co-parenting in two households due to divorce.   Don't Compete! Each co-parent is different and each co-parent has value in what they can provide to their children.   The Oliiki app is designed to create daily interactions with children up to 24 months old that explain the developmental skill the baby is learning.   Oliiki is grounded in science.  UCL Institute of Education carried out a randomised controlled trial on the Oliiki app and found that parents using the Oliiki app after only 4 weeks had higher parental self-efficacy, (more confident in their parenting) compared to the active control trial. This is significant because high parental self-efficacy is connected with low post-natal depression, low infant mental health issues and high home learning environments.   #coparenting #parenting #education #play #communication #divorce #podcast #divorcepodcast  #amicabledivorce #prenatalcommunication #childhooddevelopment #Oliikiapp #therapy #consistency #newborns #familytherapy @ClareStead @JenJackson About Clare Stead Clare Stead, Creator and Founder of the Oliiki app is an e-Learning specialist, Education researcher and primary teacher. She is passionate about helping parents and careers build their baby's brains from conception onwards, so the children reach their full potential and fly. Supporting parents early gives them the confidence to know they're doing the very best for their baby, developing knowledge and skills in play-based learning for our youngest child helps them ensure they thrive, right from the start.    https://www.linkedin.com/in/clarestead-oliiki/ www.oliikiapp.com Download the Oliiki app here https://www.instagram.com/oliiki/ https://www.facebook.com/Oliiki   Oliiki app blurb   The Oliiki app is an app for parents and parents-to-be of babies in the first 1000 days, from conception to two to build their babies brain and spark their parenting confidence one play activity at a time.   Jen Jackson   Jen has accumulated 18 years of experience in the healthcare industry and currently serves as an ambassador for healthy youth development within managed care organizations. Her primary professional focus involves identifying innovative approaches to promote youth's mental health and effectively communicating product differentiators that impact the health and well-being of members.   Jen initiated her career as a mental health therapist, providing services to children, teenagers, and families in various settings, including acute care, county mental health agency, and private practice. She holds a master's degree in social work from Temple University and is a Licensed Clinical Social worker in the state of Utah. In 2005, Jen earned credentials as a Registered Play Therapist.   www.linkedin.com/in/jenniferannjackson jj.jenniferannjackson@gmail.com

------------------Support the channel------------ Patreon: https://www.patreon.com/thedissenter PayPal: paypal.me/thedissenter PayPal Subscription 3 Dollars: https://tinyurl.com/ybn6bg9l PayPal Subscription 5 Dollars: https://tinyurl.com/ycmr9gpz PayPal Subscription 10 Dollars: https://tinyurl.com/y9r3fc9m PayPal Subscription 20 Dollars: https://tinyurl.com/y95uvkao   ------------------Follow me on--------------------- Twitter: https://twitter.com/TheDissenterYT   This show is sponsored by Enlites, Learning & Development done differently. Check the website here: http://enlites.com/   Dr. Uta Frith is Emeritus Professor of Cognitive Development at UCL Institute of Cognitive Neuroscience since 2006. She has been a Visiting Professor at the University of Aarhus at the Interacting Minds Centre from 2007 to 2015. She has been a Fellow at the Institute for Advanced Studies at the Central European University in Budapest (February - June 2014). Dr. Chris Frith is Emeritus Professor of Neuropsychology at the Wellcome Trust Centre for Neuroimaging at University College London, Visiting Professor at the Interacting Minds Centre at Aarhus University, Research Fellow at the Institute of Philosophy, and Quondam Fellow of All Souls College, Oxford. They are authors of “What Makes Us Social?”.   In this episode, we focus on “What Makes Us Social?”. We start by discussing what social cognition is, and then go through topics like learning and imitation; emotions, our need to affiliate, and joint action; predicting other people's behavior; group identity; reputation; trust; mentalizing; how high-level cognitive processes interact with low-level cognitive processes; consciousness; collective problem-solving; and teaching, cumulative culture, and the role of culture in human cognition. Finally, we discuss how we can foster cooperation. -- A HUGE THANK YOU TO MY PATRONS/SUPPORTERS: PER HELGE LARSEN, JERRY MULLER, HANS FREDRIK SUNDE, BERNARDO SEIXAS, OLAF ALEX, ADAM KESSEL, MATTHEW WHITINGBIRD, ARNAUD WOLFF, TIM HOLLOSY, HENRIK AHLENIUS, JOHN CONNORS, FILIP FORS CONNOLLY, DAN DEMETRIOU, ROBERT WINDHAGER, RUI INACIO, ZOOP, MARCO NEVES, COLIN HOLBROOK, PHIL KAVANAGH, SAMUEL ANDREEFF, FRANCIS FORDE, TIAGO NUNES, FERGAL CUSSEN, HAL HERZOG, NUNO MACHADO, JONATHAN LEIBRANT, JOÃO LINHARES, STANTON T, SAMUEL CORREA, ERIK HAINES, MARK SMITH, JOÃO EIRA, TOM HUMMEL, SARDUS FRANCE, DAVID SLOAN WILSON, YACILA DEZA-ARAUJO, ROMAIN ROCH, DIEGO LONDOÑO CORREA, YANICK PUNTER, ADANER USMANI, CHARLOTTE BLEASE, NICOLE BARBARO, ADAM HUNT, PAWEL OSTASZEWSKI, NELLEKE BAK, GUY MADISON, GARY G HELLMANN, SAIMA AFZAL, ADRIAN JAEGGI, PAULO TOLENTINO, JOÃO BARBOSA, JULIAN PRICE, EDWARD HALL, HEDIN BRØNNER, DOUGLAS FRY, FRANCA BORTOLOTTI, GABRIEL PONS CORTÈS, URSULA LITZCKE, SCOTT, ZACHARY FISH, TIM DUFFY, SUNNY SMITH, JON WISMAN, DANIEL FRIEDMAN, WILLIAM BUCKNER, PAUL-GEORGE ARNAUD, LUKE GLOWACKI, GEORGIOS THEOPHANOUS, CHRIS WILLIAMSON, PETER WOLOSZYN, DAVID WILLIAMS, DIOGO COSTA, ANTON ERIKSSON, CHARLES MOREY, ALEX CHAU, AMAURI MARTÍNEZ, CORALIE CHEVALLIER, BANGALORE ATHEISTS, LARRY D. LEE JR., OLD HERRINGBONE, MICHAEL BAILEY, DAN SPERBER, ROBERT GRESSIS, IGOR N, JEFF MCMAHAN, JAKE ZUEHL, BARNABAS RADICS, MARK CAMPBELL, TOMAS DAUBNER, LUKE NISSEN, KIMBERLY JOHNSON, BENJAMIN GELBART, JESSICA NOWICKI, LINDA BRANDIN, NIKLAS CARLSSON, ISMAËL BENSLIMANE, GEORGE CHORIATIS, VALENTIN STEINMANN, PER KRAULIS, KATE VON GOELER, ALEXANDER HUBBARD, LIAM DUNAWAY, BR, MASOUD ALIMOHAMMADI, JONAS HERTNER, URSULA GOODENOUGH, GREGORY HASTINGS, DAVID PINSOF, SEAN NELSON, MIKE LAVIGNE, JOS KNECHT, ERIK ENGMAN, AND LUCY! A SPECIAL THANKS TO MY PRODUCERS, YZAR WEHBE, JIM FRANK, ŁUKASZ STAFINIAK, TOM VANEGDOM, BERNARD HUGUENEY, CURTIS DIXON, BENEDIKT MUELLER, THOMAS TRUMBLE, KATHRINE AND PATRICK TOBIN, JONCARLO MONTENEGRO, AL NICK ORTIZ, AND NICK GOLDEN! AND TO MY EXECUTIVE PRODUCERS, MATTHEW LAVENDER, SERGIU CODREANU, BOGDAN KANIVETS, AND ROSEY!

Newscast brings you daily analysis of the latest news stories from the BBC. Today, we look at what's next for Ofsted. This follows an inquest into the death of head teacher Ruth Perry which ruled that Ofsted contributed to her death. The BBC's education editor Branwen Jeffreys, professor of Sociology of Education at UCL Institute of Education, Alice Bradbury, and executive principal of Passmores cooperative, Vic Goddard, join Adam to discuss the future of the schools regulator. And the sports minister of Saudi Arabia has denied accusations of sportswashing after his country won the right the host the 2034 World Cup. The Athletic's senior football news reporter Matt Slater breaks down why Saudi Arabia are investing in sport. You can join our Newscast online community here: https://tinyurl.com/newscastcommunityhere Today's Newscast was presented by Adam Fleming. It was made by Jack Maclaren with Joe Wilkinson and Natasa Simovic. The technical producer was Matt Hewitt. The senior news editors are Jonathan Aspinwall and Sam Bonham.

In this lecture, Dr Mikaela Bloomberg will examine the evidence for joint effects of sleep and physical activity on cognitive function. About the lecture Sleep and physical activity are intrinsically linked behaviours thought to contribute to cognitive health and dementia risk. In this lecture, Dr Mikaela Bloomberg will examine the evidence for joint effects of sleep and physical activity on cognitive function during ageing and the challenges in this area of research. She will share findings from her most recent work which highlights the importance of sleep to maximise long-term cognitive benefits of physical activity. About the Speaker Mikaela Bloomberg Research Fellow at UCL Institute of Epidemiology and Health Care Mikaela Bloomberg is a Research Fellow at the UCL Institute of Epidemiology and Health Care. Her research focusses on sociodemographic and lifestyle determinants of cognitive ageing and dementia, with previous work in sex and gender differences in cognitive and functional ageing.

About the lecture We hear so much about human-caused climate change threatening our lives. Often, any disaster including conflict is linked to climate change. Without doubt, we are changing the world's climate quickly and substantively. Many disasters, though, are much more a result of other human decisions about where people live, or are forced to live, and the options they have, or do not have, for helping themselves to avoid calamity. In so many situations, disasters could be avoided, no matter what the climate is doing or what we are doing to the climate. In other instances, human-caused climate change is leading to disasters with the only disaster prevention option being for us to stop changing the climate. This talk explores the differences and nuances, demonstrating how much we could do to avoid disasters, including conflict, while also stopping human-caused climate change. About the speaker Ilan Kelman, Professor of Disasters and Health at UCL Institute for Risk & Disaster Reduction Ilan Kelman is Professor of Disasters and Health at University College London, England and a Professor II at the University of Agder, Kristiansand, Norway. His overall research interest is linking disasters and health, integrating climate change into both. Three main areas are: (i) disaster diplomacy and health diplomacy ; (ii) island sustainability involving safe and healthy communities in isolated locations; and (iii) risk education for health and disasters. His X (formerly Twitter) and Instagram handle is @ILANKELMAN.

British politicians are obsessed with growth. But what if putting growth at the centre of economic policymaking is a mistake? Economist and founding director of the UCL Institute for Innovation and Public Purpose Mariana Mazzucato argues that it is. Ten years since her book The Entrepreneurial State: Debunking Public v Private Sector Myths was first published, Oli chats to her about what Labour and the Conservatives get wrong about economic policy. Hosted on Acast. See acast.com/privacy for more information.

Tom is joined by three incredible guests to discuss the difference teachers make (or don't make) to exam results. Ever wondered what difference you make or could make as a teacher? This is the show for you. If you are a school leader getting ready for GCSE results day and the conversations thereafter with staff teams, this is also one that is a must listen. Guests are: Robert Plomin CBE - American/British psychologist and geneticist best known for his work in twin studies and behavior genetics. A Review of General Psychology survey, published in 2002, ranked Plomin as the 71st most cited psychologist of the 20th century. He is the author of several books on genetics and psychology. Dylan Wiliam - World renowned teaching and learning expert. He is emeritus professor of educational assessment at the UCL Institute of Education. Stephen Gorard - Researcher and director of the Durham University Evidence Centre for Education (DECE). This show is brought to you in partnership with Pearson MFL.      

Join hosts Doctor Xand van Tulleken and Dr Rochelle Burgess for Season 3, Episode 4 of Public Health Disrupted with Prof Joyce Harper and Rachel Lankester. “We're more valuable to our communities post-menopause as leaders than as breeders.” How does our society value menopausal women? The lack of public awareness around this natural phase in a women's life has resulted in the menopause being associated with a lot of shame, and a whole bunch of negative misconceptions. In this thought-provoking episode, Joyce Harper (Professor of Reproductive Science at the UCL Institute for Women's Health) and Rachel Lankester (author of Magnificent Midlife) challenge the prevailing negative narrative surrounding the menopause by debunking common myths, and revealing the surprising beneficial rewards that await women post-menopause. Plus, what can we learn from the whales? For more information and to access the transcript: https://www.ucl.ac.uk/health-of-public/change-demystifying-menopause Date of episode recording: 2023-06-07 Duration: 00:40:00 Language of episode: English Presenter:Xand van Tulleken; Rochelle Burgess Guests: Joyce Harper; Rachel Lankester Producer: Annabelle Buckland

Date of lecture: Tuesday 2 May 2023 About the lecture: Anxiety can be physically, emotionally and socially debilitating. Left untreated, anxiety is associated with other serious illnesses and self-harm. This lecture summarises the recent increase in anxiety recorded in primary care, compares available drug treatments, and examines the treatments used for anxiety in UK primary care. We will also discuss the impact of the pandemic on pre-existing anxiety trends, and what will likely be needed to address anxiety going forward. About the speaker: April Slee received her PhD in Primary Care and Population Health at UCL in 2022. She has worked as a biostatistician on design and analysis of clinical trials for the past 21 years, and is an Honorary Senior Research Fellow at the UCL Institute of Clinical Trials and Methodology.

Today we air the next episode of Flux. This episode was created by Bhavani Kunjulakshmi, a recent graduate of the UCL Institute of Education and staff writer at Feminism in India. Bhavani's episode explores the meaning of colonization and decolonization in international development and education. We might think we know what colonization is. The history. The actors involved. The exploitation. But what does it feel like? And then what would it mean to decolonize? And what would that feel like? Bhavani explores these questions. freshedpodcast.com/flux-kunjulakshmi -- This episode was created, written, produced and edited by Bhavani Kunjulakshmi. Johannah Fahey was the executive producer. Brett Lashua and Will Brehm were the producers. Fred Brehm read the quote by Noah Chomsky and Fran Vavrus read the quote by Martha Nussbaum. Music was composed by M.C Couper The bell hooks' clip was a part of ‘A Public Dialogue between bell hooks & Laverne Cox hosted by Eugene Lang College of Liberal Arts' (Creative commons) The clip of Amartya Sen was a part of ‘Equality and growth – an interview with Amartya Sen' (Creative commons) Quote by Noam Chomsky about Kerala was from Pedagogy of the Oppressed: Noam Chomsky, Howard Gardner, and Bruno della Chiesa Askwith Forum (Creative commons) Quotes by Martha Nussbaum was from “Creating Capabilities: The Human Development Approach” (Creative commons) Music: The Spirituals Project – Sankofa – Oh Freedom (Creative commons) -- Learn more about Flux: freshedpodcast.com/flux/about/ Twitter: @FreshEdpodcast Facebook: FreshEd Email: info@freshedpodcast.com Support FreshEd: www.freshedpodcast.com/donate

Thomas began his academic career at University College London (UCL) medical school. After completing an undergraduate degree in Medical Sciences with Neuroscience, he enrolled on the UCL MBPhD programme, combining his PhD with clinical studies. He works in the theoretical neurobiology group, led by Professor Karl Friston, at the Wellcome Centre for Human Neuroimaging at the UCL Institute of Neurology. His research interests include active inference, computational neuropsychology, and the oculomotor system.

This week's finalist in the All in the Mind Awards is Sian who's been nominated by her mother Myra who cannot believe how much support she has given her during a manic episode and her diagnosis of bipolar disorder. Even when Myra threatened to bite Sian, she still kept calm and understood that it was her illness which was affecting her behaviour. When she let her mum look after her beloved granddaughters, it helped Myra's confidence to grow. One of the Awards judges Maddie Leslay - who plays Chelsea in the Archers - found Myra and Sian's story really inspiring and full of unconditional love. Losing language and communication skills after a stroke can be isolating - and some patients are told that there is a "window" when rehabilitation therapy needs to happen for it to work. Prof Alex Leff from the UCL Institute of Neurology says the brain's plasticity doesn't disappear completely as we age - and some of the participants in his studies saw big improvements many years after their strokes. Prof Jenny Crinnion explains how speech therapists prompt people experiencing "tip of the tongue" difficulties with finding words during the intensive speech and language therapy. Studio guest Mathijs Lucassen from the Open University samples crisps from red, white and blue bowls to see which are the tastiest and most salty, replicating a study which hopes to help expand the food choices of picky eaters. Produced in partnership with The Open University

Far away and not enough, those are criticisms of the government's latest net zero initiative – a plan to reduce emissions . We ask Jim Watson Professor of Energy Policy and Director of the UCL Institute for Sustainable Resources for his assessment. And there's money to be made from private health testing, the growth of Covid testing has been followed by an upsurge in private screening for cancer in particular, but how useful is it really? BBC Health correspondent Matthew Hill takes a look. Every cell in out body carries an electrical charge. In her new book, We Are Electric: The New Science of Our Body's Electrome, Sally Adee discusses how this facet might be harnessed for the detection of illnesses, medical treatments and whether it will allow us to develop hidden powers. The World Wood Web is a concept showing how trees communicate with each other through an underground fungal network. The idea was first proposed by Suzanne Simard, Now professor of Forest Ecology at the University of British Columbia, who tells us how she came up with the concept and about her work on the hidden relationships of trees.

What do the internet and COVID vaccines have in common? Neither would be possible without the work of DARPA, a mission-focused federal agency responsible for funding research and development. Professor Mariana Mazzucato explains that our economy would be better off if more government agencies adopted DARPA's mission-oriented approach. This episode was originally released in May 2021. You can find the show notes and transcript for that episode here. Mariana Mazzucato is a Professor in the Economics of Innovation and Public Value at University College London, where she is Founding Director of the UCL Institute for Innovation and Public Purpose. She is the author of three highly-acclaimed books: The Entrepreneurial State, The Value of Everything, and Mission Economy. Twitter: @MazzucatoM Mission Economy: https://marianamazzucato.com/books/mission-economy  It's 2023. Here's how we fixed the global economy: https://time.com/collection/great-reset/5900739/fix-economy-by-2023 DARPA's early investment in COVID-19 antibody identification producing timely results: https://www.darpa.mil/news-events/2020-11-10 Website: https://pitchforkeconomics.com Twitter: @PitchforkEcon Instagram: @pitchforkeconomics Nick's twitter: @NickHanauer