Podcasts about research initiatives

Kai Hopkins, Head of Research Initiatives with Elrha, summarizes hard dilemmas facing the humanitarian and development sectors following massive cuts in government funding. Offering takeaways from Humanitarian Networking and Partnerships Week in Geneva and discussions with other attendees, Kai and Brent discuss four key questions with no easy answers that as a sector we need to consider in response to funding cuts, and discuss the impact of cuts on humanitarian applications of artificial intelligence. Kai shares how his team is responding to the crisis and calls for a fundamental shift in how the humanitarian sector approaches partnerships, emphasizing inclusivity, collaboration, and a willingness to embrace new actors and models. This episode is part of a short interview series, geared for publishing on Mondays, providing individuals with opportunities to briefly talk about their work and share their views on humanitarian applications of artificial intelligence or to talk about developments shaping the humanitarian and technology sectors.

Dr. Simona Giorgi from Dravet Syndrome Foundation Spain shares their preclinical and clinical studies, epidemiological research, and their development of tools to support caregivers and people affected by Dravet! Highlighted are the needs for greater awareness among healthcare professionals about the capabilities of patient advocacy groups and the invaluable psychological support they can provide to families. ------------------------------------------

Jessica Barness, design scholar and scholarly designer, recently began exploring a new design sci-fi writing project that deals with blacklisted visual tools and biopreferences. When Jessica was last on the show, we discussed the Wim Wenders science fiction, dystopian movie Until the End of the World. In this episode, we talk about (what is far from a 2024 Christmas Holiday Special) Nosferatu from Robert Eggers, comparing it to prior vampire movies and critiquing facial hair, British accents, vampire hunters and academics, pre-tenure packets, and failed scholarly pursuits.-Jessica Barness investigates connections among and within design systems, from sensory media to publication histories, often found at the edges of design discourse. As Professor of Visual Communication Design at Kent State University she teaches design research and interaction design. She also serves as Design Incubation's Co-chair and Director of Research Initiatives. Prolific in every sense of the word, her projects include but are not limited to: The Designers Respond, The Quiet Design Scholar, and What Scholarship Looks Like (with Amy Papaelias, SUNY New Paltz).https://www.jessicabarness.com/ https://jessicabarness.substack.com/ https://www.whatscholarshiplookslike.net/ -Nosferatu (2024)https://www.imdb.com/title/tt5040012/ https://www.history.com/news/vampire-nosferatu-dracula https://www.syfy.com/syfy-wire/the-haunting-history-behind-nosferatu-Robert Eggershttps://www.imdb.com/name/nm3211470/ Nosferatu (2024)The Northman (2022)The Lighthouse (2019)The Witch (2015)-Other movies and shows discussed, alphabetical listBram Stoker's Dracula (1992)Dracula (1931)Jaws (1975)Nosferatu (1922)Nosferatu the Vampyre (1979)Shadow of the Vampire (2000)What We Do in the Shadows (2014)What We Do in the Shadows (series, 2019-2024)

Hey Friends,Happy New Year!Welcome back to a new year of Nina's Notes.I publish every Wednesday, so make sure you are subscribed to get hot & fresh health and science content in your inbox each week.P.S. This content looks way better via email. If you're reading this on LinkedIn, head over to the newsletter site to get registered to receive the newsletter in your inbox.In this episode, I chat with Grace Blest-Hopley, PhD, the CEO of Hystelica, CSO of NWPharma and a Reserve Officer for the British Army.We discuss her company, Hystelica, whose mission is to research, advocate and educate for safe and effective psychedelic use for women.They are currently running an observational study looking at the impact of microdosing psychedelic substances on menopausal symptoms. They are recruiting participants in the study. If you wish to take part, you can get in touch here.Beyond Hystelica, we discuss Grace's military experience and her work with the Heroic Hearts Project, which supports veterans through psychedelic therapy and the importance of community support to bring psychedelic therapies to veterans.Key Takeaways:* Grace's work with Heroic Hearts Project focuses on using psychedelics to support veterans with PTSD. Grace believes that understanding the military experience is crucial for addressing PTSD effectively.* Hystelica was founded to address the lack of research on psychedelics and women's health.* The gender data gap in research is a significant issue. Research needs to focus on women's specific health needs and women's health should not be seen as niche.* Understanding the menstrual cycle is essential in research, and microdosing psychedelics may help alleviate menopause symptoms.* Patient advocacy is vital in the psychedelic research space.Listen now on Apple Podcasts, Spotify, and Substack Podcasts.Recommended Timestamps* 00:00 Introduction and Grace's Background* 06:04 Military Experience and Leadership Development* 12:02 Heroic Hearts Project and Its Impact* 22:01 Research Initiatives and Data Collection* 29:07 Future Directions and Collaborations* 36:30 Designing the Studies at Hystelica & Observational Insights* 44:48 The Gender Data Gap in Medical Research* 49:57 Innovative Tools for Women's Health ResearchWhere to find Grace Blest-Hopley, PhD:* Hystelica* Impact of Microdosing Psychedelics on Menopausal Symptoms Study* Heroic Hearts* LinkedinWhere to find Nina Patrick, PhD:* Newsletter* LinkedIn* WebsiteThanks for listening to Nina's Notes #115. If you like this newsletter & podcast, click the share button and send it to a friend.Edited by Wright Time Publishing Get full access to Nina's Notes at www.ninasnotes.xyz/subscribe

Director Wim Wenders has inspired the likes of Beyonce and Kevin Smith, among others, and while he's known for Wings of Desire and Paris, Texas, his lesser-known epic Until the End of the World is equally fantastic. The road trip story, interspersed with science fiction set pieces and hand-held computer devices, will make you question your own relationship with machines. How do we use technology, how do machines cripple us? Jessica Barness, design scholar and scholarly designer, talks about how Until the End of the World impacted her, and why the movie serves as a prescient warning to us all.-Jessica Barness is a design scholar and a scholarly designer. She investigates connections among and within design systems, from sensory media to publication histories, often found at the edges of design discourse. As Professor of Visual Communication Design at Kent State University she teaches design research and interaction design, and serves as Design Incubation's Co-chair and Director of Research Initiatives. Prolific in every sense of the word, her projects include but are not limited to: The Designers Respond, The Quiet Design Scholar, and What Scholarship Looks Like (with Amy Papaelias, SUNY New Paltz).https://www.jessicabarness.com/ https://jessicabarness.substack.com/ https://www.whatscholarshiplookslike.net/ -Until the End of the World (1991)https://www.imdb.com/title/tt0101458/ https://www.tcm.com/video/1341225/ben-mankiewicz-intro-until-the-end-of-the-world-1991 -More Wim Wendershttps://www.youtube.com/watch?v=6dXSH9n2aC4 https://www.imdb.com/title/tt0083658/ https://www.tcm.com/tcmdb/person/204209|0/Wim-Wenders#overview -Solveig Dommartin, actress and co-author, Until the End of the Worldhttps://www.imdb.com/name/nm0231652/ https://www.tcm.com/tcmdb/person/885588%7C0/Solveig-Dommartin#overview https://www.hollywoodreporter.com/business/business-news/her-wings-warmed-hearts-130598/ -Jeanne Moreauhttps://www.youtube.com/watch?v=zYbUCtBV4wc https://www.youtube.com/watch?v=x4XV47z1ENU -Other movies discussedhttps://www.imdb.com/title/tt27503384/https://www.imdb.com/title/tt0114558/

In this episode, we explore the importance of patient involvement in shaping rare condition research initiatives. Our guests discuss why it's crucial to involve individuals with lived experiences, including patients and caregivers, in setting research agendas. In doing so, this approach ensures research can be more inclusive, efficient, and impactful, addressing the issues that matter most to those affected. Mel Dixon, Founder Cure DHDDS and member of Genomics England Participant Panel is joined by Jo Balfour, Founder of CamRARE and Dr Rona Smith, Senior Research Associate at the University of Cambridge and Honorary Consultant in Nephrology and Vasculitis. Find out more about the Cambridge Rare Disease Research Network, discussed in the episode, which aims to support the rare condition community in building an online network of partnerships and resources to facilitate new patient-centred research opportunities. "We're really turning research on its head, moving away from it being a researcher-led activity where they decide on the idea and the research concept and bring patients in at different points along that research journey and instead starting with the patient's idea in the first place.  It can only be a better system for all because it improves efficiency, it improves potentially the long term outputs and, most importantly, outcomes for patients." You can download the transcript or read it below. Mel: Welcome to Behind the Genes. Rona: I think it really means that we measure what matters to patients and individuals that are affected.  Often, it's really difficult to capture kind of the real impact of disease and there's a tendency for researchers to measure things that are easy to measure and are reproducible, which of course is important but what's most important is actually being able to truly capture the impact of an intervention on an individual's condition.  So, I think that's another key aspect of having people with lived experience involved right from the start. Mel: My name is Mel Dixon and I'm a member of the Participant Panel at Genomics England and founder of Cure DHDDS, a charity set up to raise awareness, support families and help drive research into the ultra-rare DHDDS gene variant.  On today's episode I'm joined by Jo Balfour, Managing Director of CamRARE, which is the Cambridge Rare Disease Network.  This network unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare conditions.  I'm also joined by Rona Smith, Associate Professor at the University of Cambridge and honorary consultant in nephrology and vasculitis.  Today we'll be discussing the role of patients in setting research agendas and how their involvement can lead to more impactful and patient-centred research.  If you enjoy today's episode we'd love your support.  Please like, share and rate us on wherever you listen to your podcasts. Before we begin the interview I'd like to share a little bit of my story.  In November 2022, following whole genome sequencing, we received the news that two of our three children carried a neurodevelopmental and neurodegenerative DHDDS genetic variant.  At the time of our children's diagnosis there was very little information on our gene, minimal research happening into it and no treatment pathway.  Through our charity, Cure DHDDS, we have worked tirelessly to instigate research and create a collaborative scientific research community.  I am a huge advocate for patient-led research and have witnessed first-hand the positive impact it can have on patient lives.  Thanks to the work of the many scientists that we have had the honour of collaborating with, within two years of our children's diagnosis we have a disease-modifying therapy in our sight and an ASO (Antisense oligonucleotides) therapy in development.  We are incredibly grateful for the opportunities genetic testing has given us but I also appreciate how overwhelming a genetic diagnosis can be and how challenging it can be for families to initiate research projects with little to no resources, and that's why initiatives such as CamRARE that we'll be discussing today are so important.   On that note, let's get back to our podcast guests.  I wonder before we dive into today's topic if you could both give a brief introduction, and, Rona, if you could also give the less scientifically-minded of us an explanation about what nephrology is. Rona: Thank you for inviting me today.  So I'm Rona Smith, I work in Cambridge and I'm a nephrologist and that means somebody that looks after individuals who have diseases that affect their kidneys.  My specialist interest is in something called vasculitis which is a rare autoimmune disease that affects all organs in the body but kidneys as well.  Mel: Thank you.  And Jo?  Jo: Hi Mel.  I'm Jo Balfour, the Managing Director and one of the founding members of Cambridge Rare Disease Network, or CamRARE for short.  I think we're often described as the ‘Chief Everything Officers'.  I manage the charity and all of our operations and our wonderful team.    Mel: Lovely.  Thank you very much.  Rona, I wonder also if you could explain to our listeners what is a research agenda?  Rona: So in brief a research agenda is really a strategy that outlines key questions or topics that a research community, and that might be investigators, clinicians, scientists, patients, industry,  and they are the priorities that they want to explore and address over a period of time.  So it's really a direction of travel and identification of areas of importance and where there are gaps in knowledge so that it then leads to the opportunity to form specific research questions that you can then go on and address.  Mel: Why do you both think it's important to involve patients in setting these research agendas?  Jo: Well I think critically one of the things that I've learnt over my time working, not just in the rare disease sector but also earlier in social care and education, is that we should as professionals never assume anything; you know, we have not lived in their shoes and we don't know what the daily life of people living with rare conditions is like.  So gathering that day to day lived experience is really crucial.  And I have a unique opportunity to see into that daily life with our local community of rare disease families who have a range of different rare conditions.  I'm party to their conversations, to their daily trials and tribulations, the things that are difficult, the things that they find joy in but I still will always go back to them and ask their opinion.  I see myself as a spokesperson for them as we're an umbrella organisation but I certainly never really know what it's like to live with their conditions.  I think they bring with them diverse experiences which we really need and value in setting research priorities, they have unique knowledge of their own conditions.  They ethically have a right to be involved from the start and to set that priority and agenda but, equally, it's valuable for us as researchers because if we can involve people early we have definitely more chance of good engagement and later success, better outcomes for everyone.  Mel: Couldn't agree more.  And, Rona, is there anything you'd like to add to that? Rona: I think it really means that we measure what matters to patients and individuals that are affected.  Often it's really difficult to capture kind of the real impact of disease and there's a tendency for researchers to measure things that are easy to measure and are reproducible, which of course is important but what's most important is actually being able to truly capture the impact of an intervention on an individual's condition.  So I think that's another key aspect of having people with lived experience involved right from the start.  Jo: Another thing that's actually quite interesting that I'm going to mention here is that I think when you live day in, day out with a condition your perception of things like pain is different from your average person's so you become almost accepting of your daily norm, and I think that's really critical to understand as well.  And it's only by getting to really know patients and understand. When we say, “What's your pain like on a scale of 1 to 10?” you know, something that I feel as pain because I get it rarely I probably am going to put it at a higher score than somebody who has that every day.  So I think there's subtleties and nuances like that as well which are really critical to get across by conversation with patients.  Mel: That makes absolute sense.  And I see that from the patient perspective myself.  I was out with my friends the other day and they said, “Oh my goodness, you're constantly taking your children to sports activities.”  Because of their physical needs we're constantly,  they go to Pilates, they go to swimming, they go to gym class – we try to keep them fit and healthy – and we, even though they're older, have to take them there and back and that's become our norm but when you're speaking to families whose children don't have those difficulties they have no idea how much time that actually takes up.  And I had no idea how much like time it takes up compared to what other people are doing because that is our norm, that's what we've accepted as the norm.  Patients and patient groups are incredibly driven and invested in their rare disease as well so they make really good rare disease research partners.     And, moving on, what do you see as the challenges and barriers to patient involvement and how do we overcome these? Rona: I think probably the biggest barrier is time.  So, the most important thing is investing time to build relationships, to really understand in-depth perspectives both from the patient's side but also the researcher's side. And, inevitably, we always want to do things faster and actually this is one really, really critical aspect is investing time.  Funding is also a challenge.  Often you have to do a lot of upstream work before you have got funding for a project and that takes time from individuals and that's another challenge.  And I think the third thing for me is individuals that are patient partners in research, they're not just patients, they're people - they have lives, they have work, they have families, they have everything else that goes on in life - and so actually fitting this all in is really challenging.  Mel: Jo, is there anything you'd like to add there?  Jo: Yeah, I think just a word about diversity really and, you know, how do we uncover those hidden families and patients who currently don't really have a voice.  I think we'd all acknowledge that there are key voices within the rare disease community who will share the views of their community and they've become well-oiled machines almost at being great advocates but, as I mentioned earlier, even though I'm perhaps one of those people, you know, I speak for a community, I would never assume anything.  So, I still need to uncover the thoughts and the feelings and the emotions and the needs and the what matters from those people, and, as Rona mentioned, that takes time and it takes building relationships and trust with people.  So, we have a wonderful community in the Eastern region of England which is made up of families affected by all different rare diseases, and undiagnosed.  And some are babies and have been lucky enough to get a very early diagnosis and others are young adults but what we're finding through that is that experience is diverse and experience changes over time as families go through transition periods or they meet a roadblock and they're having to navigate things differently.  So, it's about building those relationships.  That takes times, it takes resources, it takes sometimes a reset in the way that we think things need to be done.  So instead of asking questions all the time and putting surveys out and trying to get response that way it takes a bit of thinking about how do we listen better and how do we give those people who don't have a voice, who are non-verbal or perhaps have a learning disability, how do we ensure that we're capturing their views as well.    And we did a really lovely project actually last year, it was something funded by the NHS called My Story, My Way, where we actually spent three months with our young adults working out what it was they wanted from our community next, how did they want us to follow them into adulthood.  And we knew that there were a number of young people in that group who were non-verbal and had some learning differences and we knew that we couldn't just do it in the normal format, we couldn't just do a focus group and ask their opinion, so we actually did it through photography.  So each of the familiess well, the young person themself was given a simple camera.  They basically had thirty-six shots.  You got thirty-six clicks to capture the things, the people, the places that you love and then to share them with us as a community.  And then we all discuss, you know, how these things might be something we can build into our future plans for them.  And it was such a wonderful activity.  We gave them plenty of time, plenty of opportunities to ask questions.  If the young person themself couldn't physically click the camera their sibling got to help them.  And their sibling or their parent was given another camera in black and white so we had distinctive pictures, pictures that the kid themself had taken, pictures that the family had taken, but all together, you know, it gave this lovely kind of medley, this beautiful visual representations of what mattered to them.  And I think it's about taking the time to be creative with people like that and really get to the bottom of “How do we find out what matters to you?” Mel: Although it takes time to think about those ideas.  That could be translatable across the board really, couldn't it, throughout various conditions.  I think that's fantastic.  Rona, I wonder if you can tell us how has the work that's already been done through the patient-led research hub facilitated addressing research priorities.  Rona: So just a tiny bit about the patient-led research hub.  So, this has been now running for nearly ten years through Cambridge.  It's a partnership between the Cambridge Biomedical Research Campus and we're based within the university and the Trust.  And in essence it kind of was set up because of really a mismatch between what many patients wanted from research and what investigators' views were.  And so really the premise is that we welcome patients to come to us with an idea, a problem, an unmet need in their disease area – and we do focus on rare disease – and we work with them to see “Well actually what do we already know about that?” and then if there is a gap in knowledge we then move to kind of trying to work and develop a question that we can then address.  And that might be a question that's addressed through generating more information through surveys or it may actually be a question of an intervention that we can test.  So, we've had lots of projects come through and we, just an example of a project was from a group of patients with a rare kidney condition called autosomal dominant polycystic kidney disease, and that is a condition where over time you accumulate cysts in your kidneys and the kidneys become large, they become very painful and eventually they can fail.  And a question that the patient group had was about whether drinking more water could impact the rate of growth of these cysts, and there's a strong hypothesis behind that that drinking lots of water reduces down the level of a particular hormone.  And we actually worked with the charity behind this group, the Polycystic Kidney Disease Charity, and designed a study to test a very high water intake to a normal water intake to see whether it was possible over a period of eight weeks for patients to actually stick to this.  It's quite difficult to do.  And they recorded how much water they'd drunk, they tested their own urine and actually it showed that this was feasible to do this kind of work.  So, I think the patient-led research hub is kind of taking the research priorities that are important to patients but working in a patient-led way to come right through to a project.  Mel: That sounds great.  And if the patients are engaged from the start of the project and it's led by them they're obviously going to be much more driven to take part in the actual research and see the research through themselves.    So, Jo, I'm very excited to hear about the launch of the Rare Disease Research Network.  Can you please tell me what the research network is and what you hope to achieve with it?  Jo: So the Rare Disease Research Network is first of all a bit of a mouthful so we're going to try and encourage people to call it the RDRN.  It's a co-created project which really the patient-led research hub in Cambridge approached us about in 2022, I think, we started talking about this, approached CamRARE as a partner to apply for an NIHR partnership grant, and we were successful with that to really take the model that the patient-led research hub had already developed and found was successful, and perhaps too successful for its own good – they were receiving more applications and more ideas than they could manage – and to develop that into an online platform.  So taking the same model, making it more accessible to a wider group of people, potentially worldwide, and providing the hand-holding that the patient-led research hub has always done, helping patients really consider their question, formulate that into a research idea, then do the literature search to find out “Is this question already answered, and if it is, great, can we provide that information to our community?  If it's not, how do we then build a team?  Who needs to be in my research team?  How do we then get funding together to take this idea forward?”  So, it's really taking the model, taking the good practice that already existed and creating an online platform to really attempt to replicate that as best we can. So the platform will launch on 23rd November (2024) at CamRARE's Rarefest which is a lovely in-person activity that's going on in Cambridge, and that platform will be open to anyone who has an interest in rare disease research.  But I think, critically, what's different about this is that, you know, we've talked about setting research agendas and we've talked about patients contributing to that, contributing to setting the priorities, what's different here is that the patients decide on the questions; it's what matters to the patients coming from them and their community.  And it's an opportunity for them to showcase those questions and those idea on a platform and almost to have a call to action, “Is there anyone else on this platform who has similar research interests to me?”  The platform will matchmake them together through a series of choosing tags, choosing tags about particular disease areas -  It's linked to the Orphanet database - choosing tags about the type of research that you're interested in.  That matchmaking process will happen, which at the moment is a very serendipitous process but we hope to take it a little bit further on from that.  It's still going to be a little bit of potluck who's on the platform at the time who's got similar interests as you but hopefully it will improve that serendipitous system.  And it will allow them to access resources on the platform, which is the kind of hand-holding bit, and also, critically, some mentoring.  So, there's a real sort of opportunity here for professionals – researchers, industry partners, healthcare professionals – who have particular skills in research to be able to say, “Well I can help.  I might not be able to be part of your team at this point but if you need half an hour on a Zoom call with me to think about your research question I can offer to mentor you on that.”  But, likewise, I think there's going to be lovely opportunities here for patient groups to support each other too because what we've always realised is that patient groups are at different points of their research journey.  You know, we see some organisations that are really well-funded now who are in partnership with industry, you know, they have a group of pharma companies that are supporting the development of treatments and they've kind of reached that point where they're very highly skilled and very well experienced.  And then there's others who are mum and dad who've just had a recent diagnosis for their child, they've gone searching on the internet, they can't find information, they don't have a patient organisation to rely on so they're going to make one themselves.  This happens all the time in the rare disease field.  There are 11,000 different rare conditions and there's not a group for all of them so mum and dad will often start something themselves and then in lots of cases want to do some research, they want to answer some of these questions.  So, you know, they're really starting from a very different beginning stage here where they've going to need some help, and sometimes the best help comes from their peers, it comes from other patient groups.  So that's in a nutshell what it's about; it's about providing opportunity for patient groups to showcase their great ideas, build partnerships and take research forward.   Rona: The only thing just to add there is I think, although rare diseases are individually rare, collectively, as Jo said, they're quite common, there's 11,000 rare diseases, and often, although they all have distinct features, there are common threads through rare diseases in terms of maybe symptoms that patients experience or challenges that their rare disease brings.  So, for example, you may have symptoms of pain or seizures that are common across many conditions, there may be educational needs that are threads going through.   And groups could work together maybe to answer a question that's relevant to a number of conditions and so bringing people together for that.  Or there may be another group that's already tried to answer that question in their condition and you can learn what worked, what didn't work.  I think that's the other thing, is there will be common threads that come through, and I think that would be a real strength of the network to draw those people together. Jo: I think as well, Mel, if we take this back to what we said right at the outset about optimising success for patients by bringing them into the conversation early, I think this platform provides the perfect opportunity to do that.  So we're moving away from, we're really turning research on its head, moving away from it being a researcher-led activity where they decide on the idea and the research concept and bring patients in at different points along that research journey and instead starting with the patient's idea in the first place.  It can only be a better system for all because it improves efficiency, it improves potentially the long-term outputs and, most importantly, outcomes for patients.  Mel: We were that family, that mum and dad setting up the charity a year and a half ago for the ultra-rare disease that our children had.  I think, you know, the match-making opportunities that are here are fantastic because finding yourself in that position is incredibly isolating.  And not only the matchmaking opportunities with the researchers but, as you were saying, Rona, as well with similar diseases; there's so much to learn from other diseases that may have, I don't know, a similar phenotype in the cells or similar symptoms.  That's what we found from connecting with these other rare conditions.  So, for us it's lysosomal storage diseases, we've now got the opportunity potentially to piggyback on drugs better used for their diseases for our own ultra rare condition, you know, where for us to run a full-on clinical trial by ourselves with a new drug, I mean, we just wouldn't have,  there's no funding, there's not enough interest.  So, I think the opportunities that lie in this network are really, really exciting.  Jo, can you tell me a bit more about who can join the research network?  Jo: So anyone with a rare disease research interest. That's everybody from individuals affected themselves, their family members, their caregivers, the patient organisations, that support them, and then, you know, all sorts of rare disease professional researchers.  So, we're looking for PhD students who are looking for their first exciting project to undertake, have they taken a look at the Rare Disease Research Network to see if there's any ideas that might pique their interest.  We're looking for established researchers, medical professionals who are undertaking clinical research but also I think, importantly, companies.   You know, we hear more and more about concepts like drug repurposing for rare diseases where we're looking at the opportunities for taking drugs that already exist and have been proven safe to be redeployed to other rare diseases. It's quicker, it's more efficient, it's cheaper, so does it open up opportunities for companies that are using that technique to get involved.  And also pharma companies.  This platform is not all going to be about finding cures and treatments but it certainly will be a priority for some groups.  So we really are welcoming everyone with an interest in rare disease research to get involved, be part of the network, collaborate, help where you can. Rona: And also, as we've said before, once you've got that level of engagement and the patients leading these initiatives we've found, certainly with our group, the patients are much more willing to, say, find the MRI scans for the scientists, to have a blood sample done, to have skin fibroblasts taken.  If they know and they understand and they're driven and, as you said, the research idea has come from them as a patient group it certainly increases the chance of them being fully involved in the project from the start to the finish.  And all these things are imperative to understanding rare conditions because without researchers having the opportunity to look at these various samples you're not going to stand much of a chance of finding a treatment.  Jo: And we want the opportunity to upskill patients as well.  I think there are many people out there with great ideas who haven't yet found the confidence to promote those ideas because they're not quite sure of what the research journey looks like or what it might entail or whether they've got the right skills.  But I think by joining the platform and almost kind of watching how other people are managing these things and utilising the resources and the mentoring I do really hope that will build that confidence and those skills sets in people so that they can engage.  Rona: Yeah, just to add to that, I don't think it's just upskilling patients and patient groups, I think it's upskilling everybody involved in rare disease research.  This is quite a different way of approaching research, it's something that maybe academics may feel a little bit uncomfortable with, it's not how it's normally done, so I think there's a whole learning process.  And the aim is that this RDR network will evolve and will develop and the direction it goes will be driven by the community that are engaging with it.  So I think it's a really exciting time just as we're coming up to launch to see where this goes.  Jo: Mel, you've been involved in this project, it would be really interesting actually to hear from you. I was just thinking, as part of the co-creation community we had 25 individuals from the rare disease community who built this platform from scratch with us; Rona and I might have set out all the vision for how we wanted the platform to be or what we thought might be a good idea but ultimately it was the community who decided and they literally have fact-checked and cross-referenced every word that's gone on the platform. What has that experience been like for you as a patient representative?  Mel: I think it's been really welcome to see a network that is truly putting patients at the centre of everything.  So, from the very beginning foundations you have the rare disease community involved which is exactly what you're trying to create through your network.  So, I think it's been very welcome to be involved in the project and I also think that hopefully it will sort of be self-perpetuating that this will start to press a reset button on how we think about rare conditions and how it needs to be a more equitable field with patients.  Because I think, as you've both alluded to, while some clinicians and researchers are very onboard with this, for others it's a new concept that they still need to potentially adjust to or get their head round because it is a different way of thinking.  But in rare disease, well, in any condition really but particularly rare disease because there's so few experiences to draw on, I think that patients are vital to moving forward and to making that change so that diseases and conditions that have previously had no treatment, like, hopefully this way of thinking can expedite those treatments because, well, as a rare disease representative myself for our community that's one of our biggest drivers.  We're dealing with a condition that's progressive that affects most of our community's children; that is what we want, we want treatment, we want something that can stabilise the conditions.  You know, you can have researchers doing random projects that would make no difference to the final outcome of patients but if researchers know it's a priority of this particular group, hopefully that can channel in their focus and get the outcomes that the patients want in a more timely collaborative way.  So, I am a huge advocate for what you're doing, I think it's an incredible initiative.  Is there anything either of you would like to add to that? Rona: Rare disease disproportionately affects children and young people.  So, 7 out of 10 rare diseases develop in childhood and at the moment the Rare Disease Research Network hasn't really got a forum for including children and young people, and really that's partly because, and Jo can speak much more eloquently to this with her experience.  Actually, we didn't do that at the start because we feel that this is actually a discreet piece of work that really needs to be done in collaboration with children and young people to make sure that it's done well so that they can engage in the platform. So, Jo, I don't know if you want to talk about how we're hoping to take this forward.  Jo: Yeah, so we're busy developing a project plan at the moment which we're hoping to get funding for to work over eighteen months with a team of young adults with rare conditions, probably from our Unique Feet community and keep it local because we already have a good relationship with them and they have our trust.  But the idea would be to work with lots of other young people's forums.  So there's already ones established in and around our area, such as Pedal, which works with really small children, and there's also groups that are set up for young people with cancer.  So we've already had lots of great conversations with them about how we can work with them, how they can help us sense-check our project, and then in return we can help them better understand research and their ability to be involved in that.  But ultimately by the end we want to run focus groups, we want to develop some peer mentors within our community, so young adults who've, you know, perhaps come out the other end of a period of transition into adulthood who can support other young people with rare diseases to also become researchers, to come up with their own ideas and their own questions, and to sense-check projects that come through the platform.  So it's a really exciting opportunity to truly involve the people who are affected most by rare conditions but we know through our My Story, My Way project that this has to be done gently, carefully, given time and done really thoughtfully.  So that's our next step and we hope to be able to share those learnings with people so that it can be done elsewhere.  Mel: And do you see the network also working with children with learning differences? Jo: Absolutely.  We'll invest a lot of time and energy in ensuring that materials are accessible, inclusive and suitable for the community that we're working with.  Mel: So looking to the future, how do you think, Rona, can patient-led research help to shape the future landscape?  Rona: So I think, Jo used the term earlier, kind of this is really turning research on its head, so it's really putting patients right at the centre of research, so it just makes sure that it's absolutely driven by what matters to them to get the outcomes that matter.  And, again, it's just got all that benefit of efficiency and really answering those questions that matter.  Mel: And, Jo, do you think this could lead to more collaborative partnership, for example, between industry and academia, potentially leading to quicker clinical advancement? Jo: I would absolutely like to think so.  You know, as CamRARE we run a companies forum which is a roundtable meeting for pharma and biotech companies and other organisations like Genomics England who are involved in the rare disease therapeutic space and diagnostics, and I think one thing that I find really heart-warming about those meetings is that, you know, different companies are able to sit around a table as competitors but with a very open mind to addressing the barriers and the bottlenecks that prevent them from getting drugs to patients.  Because of course it's not just the research journey that's a challenge, it's the regulatory side of things at the end of that journey; just because you've created a great drug it doesn't matter in the end if it doesn't get to the patient.  So, you know, access is critical and involving patients at the earliest possible moment to ensure that that treatment gets through to the regulators and gets access to patients is the only way forward.  We had a recent companies forum meeting where we were exploring health-related patient reported outcome measures, or PROMs, and we had a speaker from NICE who's the regulatory body, we had a speaker from Sheffield University who was talking as an academic about developing PROMs for industry and for patient groups and we had Emily Reuben, the CEO of Duchenne UK, and we had an amazing discussion about the importance of involving the patient community from the outset.  And the academic explained that developing a PROM for Duchenne UK had taken them two years and it had taken them that length of time because they'd followed this careful thoughtful pathway of making sure that they didn't assume anything about what matters to patients.  But that of course, as we said earlier, involves time, it involves financial commitment, it involves resources and the right attitude, but I do think that a platform like the Rare Disease Research Network can really try to harness all of those things by bringing the right people together – industry, academia and patients – to work together equitably. Mel: And with the network do you think you'll be getting the regulators in at that initial stage as well so that, like you said, the patients can gain access while we're dealing with their priorities, the regulators are informed at the very earliest stages so that we know the process that's being followed will ultimately lead to patients gaining access to the relevant therapies?  Jo: Yes, I think this is really important, and there's actually, we've got a section on the new platform which really talks to each of the different stakeholders.  ‘What's in this for me?'  ‘Why is it important for you to be here and to join?'  And one part of that is funders and that includes the regulatory bodies.  And at the next companies forum meeting we're actually going to be bringing the Rare Disease Research Network Platform and its potential to the companies forum meeting and we'll have regulators involved in that.  So, you know, we are constantly talking to people about why it's important for them all to be involved and all to see what matters. I think I'd like to advocate for an extra letter at the end of PPIEP - if we could squeeze a D in there at the end too.  So over time that terminology has expanded to be Public Patient Involvement Engagement and Participation, which was added I think this year, but it would be lovely to have the D on the end and to include ‘Driven' because I think what's really important about this platform is that it's not just engagement and involvement, it's not just participation, it's initiated by and driven by patients. Mel: So I think we'll wrap here.  Thank you to our guests, Jo Balfour and Dr Rona Smith, for joining me today as we discuss the role of patients in setting research agendas.  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've been your host, Mel Dixon, and this podcast was edited by Bill Griffin at Ventoux Digital and produced by Naimah Callachand. 

In this episode of the 9innings Podcast, host Kevin Thompson, founder and CEO of 9i Capital Group, discusses the groundbreaking Future Proof event with guest Matt Middleton. Kevin praises the event's transformative impact on the financial services industry, highlighting its vibrant atmosphere and innovative networking opportunities. Matt shares insights on the event's success, noting a significant increase in attendance and the importance of fostering a collaborative environment. They discuss the event's no pay-to-play model, which promotes inclusivity and diverse voices. The episode underscores Future Proof's role in creating meaningful connections and setting a new standard for industry gatherings.Attendee Experience (00:02:00)Networking Philosophy (00:05:22)Future Proof's Unique Model (00:12:12) Personal Reflections (00:15:16) Introduction and Personal Reflection (00:17:18)Community Building Insights (00:17:51) Future Proof Citywide Announcement (00:18:44) Event Structure and Partnerships (00:20:16) .Data and Research Initiatives (00:21:13) Closing Remarks and Event Success (00:22:01) Follow Us: youtube: https://www.youtube.com/@UCw9yLfTDBAprrLWvmcT6fFA Linkedin: https://www.linkedin.com/in/kevin-thompson-ricp%C2%AE-cfp%C2%AE-74964428/ facebook: https://www.facebook.com/MLB2CFP Buy MLB2CFP Here: https://www.amazon.com/MLB-CFP%C2%AE-90-Feet-Counting-ebook/dp/B0BLJPYNS4 Website: http://www.9icapitalgroup.com Hit the subscribe button to get new content notifications. Corrections: Editing by http://SwoleNerdProductions.com

This episode is sponsored by Bloomreach.  Bloomreach is a cloud-based e-commerce experience platform and B2B service specializing in marketing automation, product discovery, and content management systems.   Check out Bloomreach: https://www.bloomreach.com Explore Loomi AI: https://www.bloomreach.com/en/products/loomi Other Bloomreach products: https://www.bloomreach.com/en/products In this episode of the Eye on AI podcast, we sit down with Randall Degges, Head of Developer Relations and Security at Snyk, to uncover the impact of AI on cybersecurity and software development.   Randall shares his 20+ years of experience as a software developer and security expert, leading us through Snyk's innovative approach to developer security. We dive into how Snyk is changing vulnerability detection and code generation by leveraging a hybrid AI model—combining symbolic AI for accurate detection and generative AI for smart fixes.   We explore the challenges and opportunities of using AI in code security, discussing whether AI-generated code can ever fully replace human coders or if it's best suited as a powerful tool in a developer's arsenal. Randall also addresses the risks of AI hallucinations in code generation and how Snyk mitigates these through rigorous testing and validation.   Join us as we discuss the future of coding, the role of AI in software development, and how developers can stay ahead in this rapidly evolving landscape.    Don't forget to like, subscribe, and hit the notification bell for more expert insights into the latest AI and cybersecurity trends. Stay Updated: Craig Smith Twitter: https://twitter.com/craigss Eye on A.I. Twitter: https://twitter.com/EyeOn_AI (00:00) Preview and Intro (00:34) Randall Degges Background (01:33) The Role of AI in Security at Snyk (03:28) Symbolic vs. Generative AI in Code Security (04:57) How Snyk Uses Rule-Based AI for Detection (06:48) Challenges with AI-Generated Code Fixes (09:08) The Future of AI in Code Generation (11:56) Integrating AI with Developer Tools (16:06) Risks of AI-Generated Code and Internet Saturation (22:25) The Hybrid AI Approach for Code Security (26:31) Future of AI and Its Impact on Developers (30:02) Snyk's Integration with IDEs and Research Initiatives (33:48) Autonomous Fixes and the Future of AI in Development (41:04) DeepCode AI Fix Engine and Snyk's ID Plugin (46:38) Will AI Replace Developers? (50:16) AI Readiness Report Insights (52:59) Tech Layoffs and Opportunities in AI  

This episode is sponsored by Oracle. AI is revolutionizing industries, but needs power without breaking the bank. Enter Oracle Cloud Infrastructure (OCI): the one-stop platform for all your AI needs, with 4-8x the bandwidth of other clouds. Train AI models faster and at half the cost. Be ahead like Uber and Cohere.   If you want to do more and spend less like Uber, 8x8, and Databricks Mosaic - take a free test drive of OCI at https://oracle.com/eyeonai     In this episode of the Eye on AI podcast, join us as we sit down with Dr. Sethuraman Panchanathan, Director of the National Science Foundation (NSF), where we explore the impact of AI on research and innovation.   Dr. Panchanathan delves into his journey from PhD student in machine learning to leading one of the most pivotal science organizations in the world. With a background in vector quantization and neural networks, his extensive experience positions him at the forefront of AI advancements.   Discover how the NSF is revolutionizing AI through strategic investments and initiatives like the AI Institutes and the National AI Research Resource (NAIR). Dr. Panchanathan explains how these programs democratize access to cutting-edge computational resources, fostering innovation across diverse regions and disciplines.   Learn about NSF's $828 million investment in AI for 2023 and the agency's unique approach to allocating funds across various scientific domains. Dr. Panchanathan shares insights on the importance of partnerships with industries, educational institutions, and international bodies, emphasizing the need for a collaborative ecosystem to drive AI progress.   He also touches on the role of AI in addressing societal challenges and the ethical considerations in AI development.   Tune in to understand how NSF is leading the charge in AI research and development, ensuring the US remains at the cutting edge of technological innovation.   Don't forget to like, subscribe, and hit the notification bell for more deep dives into the technologies shaping our world.     Stay Updated: Craig Smith Twitter: https://twitter.com/craigss Eye on A.I. Twitter: https://twitter.com/EyeOn_AI This episode is sponsored by Vanta, The security and compliance platform trusted by more than 7,000 customers.With Vanta, you can unify your security program management with a built-in risk register and reporting, and proactively manage security reviews with AI-powered security questionnaires.   Listeners get $1,000 off Vanta at https://vanta.com/eyeonai (00:00) Preview and Introduction (02:31) Dr. Panchanathan's Background and Path to NSF (05:45) Overview of NSF's Funding and Research Initiatives (08:17) AI Funding and Allocation Strategy at NSF (11:57) Importance of AI Institutes and Collaborative Efforts (14:55) Democratizing AI Access through NAIR (20:04) NAIR Pilot Projects and Partnerships (24:23) Accessing Compute Resources via NAIR (27:43) Scaling NAIR and Future Projections (30:14) Broader NSF Funding Allocation and Strategic Planning (33:34) Utilizing AI for NSF Operations (37:09) International Collaborations and Comparisons (42:05) Staying Ahead in Global Research Investments (46:03) Focus on Innovation and Talent Development (48:40) Regional Innovation Engines and Future Plans for NSF

**Breaking Ground as a First-Generation Trailblazer**  In this episode of SA Voices From The Field Dr. Jill Creighton had the chance to speak with Alejandra Campoverdi, a formidable force advocating for women's health and an inspiration for many first-generation college students. Her memoir, 'First Gen: A Memoir,' beautifully encapsulates the emotional complexities that accompany the breaking of generational barriers, a theme that resonates deeply with many of our podcast's listeners. Alejandra's narrative is both personal and universal, detailing her own struggle with panic attacks and other challenges as she navigated the social ladders of legacy-based institutions. Her experience in the White House, and the pivotal role mentors played in her journey, offers a powerful testament to the lasting impact of educators and advocates across different walks of life. **Legacy and the Emotional Rhyme of Generations** Alejandra poetically introduces the concept of 'generational rhyming,' drawing lines between the past and present experiences. By reflecting on the courage of women in her family—those who confidently stepped away from chaotic relationships while carrying the burden of pregnancy—Alejandra emphasizes the inheritance of resilience and the personal choice to either continue or modify the legacy we carry forward. **The Cultural Tapestry of Health and Sacrifice** This episode also delves into Alejandra's advocacy for women's health, illustrating the interweaving of cultural expectations and individual wellness. Her frank discussion on BRCA mutation and confronting a familial pattern of breast cancer underscores the critical necessity of breaking cycles, not only socially and economically but also health-wise. **Systemic Issues and the Imposter Experience** Alejandra's views on 'imposter syndrome' are particularly enlightening, challenging the notion that it stems solely from personal insecurity rather than also being rooted in systemic disparities. This perspective invites a broader conversation on the structural changes needed to support and validate the experiences of those breaking new ground. **Connecting with Alejandra Campoverdi** Listeners can reach out to Alejandra Campoverdi via her DMs on Instagram, LinkedIn, or her website. Her gracious acknowledgment of her mentors, including her former White House boss, and her thanks to the NASPA family and Dina from the First Gen Center, that manifests an ecosystem of support that many 'firsts' heavily rely on.    TRANSCRIPT Dr. Jill Creighton [00:00:01]: Welcome to student affairs voices from the field, the podcast where we share your student affairs stories from fresh perspectives to seasoned experts. This is season 10, continuing our season 9 theme of on transitions in student affairs. This podcast is brought to you by NASPA, and I'm doctor Jill Creighton. She, her, hers, your essay voices from the field host. Welcome back essay voices. It was amazing to run into so many of you at the annual conference, and thank you again for continuing to listen to us. Today, we're gonna be releasing the first of several annual conference episodes, and we were thrilled to sit down with the closing keynote speaker, Alejandra Campaverdi. Alejandra is a nationally recognized women's health advocate, best selling author, founder, producer, and former White House aide to President Obama. Dr. Jill Creighton [00:00:48]: Alejandra's memoir, First Gen: A Memoir, examines the often unacknowledged emotional tolls of being a trailblazer. A national bestseller, 1st Gen is the winner of the California Independent Booksellers Alliance Golden Poppy Martin Cruz Smith Award and long listed for the outstanding works of literature award for the 1st year experience. 1st Gen is also the 2024 Opportunity Matters book club selection for the Council For Opportunity in Education, a national book club for 1st generation and low income students at colleges and universities across the country. Previously, Alejandra served in the Obama White House as the 1st White House deputy director of Hispanic Media. She produced and appeared in the groundbreaking PBS documentary, Inheritance, and founded the Latinos and BRCA Awareness Initiative in partnership with Penn Medicine's Master Center for BRCA. Alejandra holds a master in public policy from Harvard University's Kennedy School of Government and graduated cum laude from USC. She currently serves on the boards of Harvard's Shorenstein Center on Media, Politics and Public Policy, and the California Community Foundation. I hope you enjoy our conversation. Dr. Jill Creighton [00:01:50]: We were able to have this one live in person, so you may notice some slight audio differences in quality. Please enjoy and we're also going to be bringing you couple more bonus episodes throughout the next couple of weeks. Alejandra, welcome to SA Voices. Alejandra Campoverdi [00:02:03]: Thank you so much for having me. Dr. Jill Creighton [00:02:05]: I am really excited to get to know you a little bit and we really appreciate you taking time out of your schedule to talk to SA Voices here in Seattle. Alejandra Campoverdi [00:02:12]: I know. It's fun to be in Seattle. Right? Dr. Jill Creighton [00:02:13]: Is this your first time? Alejandra Campoverdi [00:02:14]: No. I was actually here a few weeks ago for another conference, but I had so much fun eating my way through the city. Dr. Jill Creighton [00:02:20]: Oh, what was your favorite thing? Alejandra Campoverdi [00:02:22]: That was a lot. The crumpets over at the Pike Place Market, incredible. Dr. Jill Creighton [00:02:27]: Crumpets. Okay. That's a new one. Most of my friends say Top Pot Donuts is their their jam or, I haven't been to the crumpet spot. Dr. Jill Creighton [00:02:35]: This is my hometown so it's always fun for me to see people discover it through fresh eyes. Alejandra Campoverdi [00:02:39]: Nice. Well, you have to give us your tips then. Dr. Jill Creighton [00:02:42]: Really, it's just don't eat downtown. I think it's my biggest tip. Most of my friends and family enjoy restaurants kind of more out in the community. But we are glad to have you here as our closing keynote speaker for NASPA 2024 here in Seattle. On our theme of transitions, you were just an excellent guest to have to talk about all the transitions you've gone through in your life. Your book right now is 1st Gen, a memoir, and that has been just a really beautiful read. I've been able to take a look at least the first couple of chapters and and really kind of get to know you through that lens. But I'm wondering if you can tell us a little bit about your journey as you've written about it. Alejandra Campoverdi [00:03:17]: Well, thank you for reading it, Amy. I feel really honored to be invited to speak at NASPA. As I say in the book, the reason why I felt compelled to write it really was because, you know, as someone who was a Pell Grant recipient myself and grew up in a lot of pipeline programs and nonprofits, when I would go and speak to young people, especially students even before this book was even an idea in my mind, I noticed that there seemed to be a lot kind of hanging in the air. Some mixed emotions and almost like looks on folks' faces that I recognize on my own face at these kind of transitional achievement moments that should kind of be 1 dimensional but kind of weren't. And as I noticed that, I started kind of changing the way that I would speak and the kinds of stories I would share. And the more vulnerable I was about how it was harder than many times we're led on to believe in inspirational speeches, really helped crystallize for me how much of not only my own experience but a lot of our experiences have some shame around them that there are conflicting emotions that we don't always share even though they're so completely widespread. And a lot of it namely about the emotional toll of social mobility and the American dream as it's been presented to us. And, you know, in the book, I really talk about how it's for first and only. Alejandra Campoverdi [00:04:45]: I call us first and only because it isn't just this gatekeeper definition of who has a right to kinda like that first gen experience. I understand that in in academia and in different institutions, you need to have a definition of who qualifies and doesn't qualify. But for this emotional experience in the book, it's about being as inclusive as possible because this experience of cycle breaking and that emotional toll transcends race and gender and and so many different experiences. So that was a lens that I discussed this with, and I really use my own story growing up, you know, as the daughter of a single mom who had immigrated from Mexico a few years before I was born to kind of be the companion of walking through a lot of these different dynamics. Dr. Jill Creighton [00:05:33]: You talk about generational rhyming in your book as part of that transition story. Can you talk to us about what you mean by that? Alejandra Campoverdi [00:05:39]: Well, as a part of this book, I named something called the trailblazer tool. And I don't name that from a position of authority as someone who is a trauma specialist or an academic or a specialist in psychology or so on. The reason why I do that is because as I mentioned, you can't heal from that which you don't name. Mhmm. And so how do we create space for this holistic view that doesn't only include imposter syndrome but includes the way that being a cycle breaker first and only moves throughout our entire life even before we get to school and for many, many years after. You know, once by the time you're a 1st gen student, you've been 1st gen already many times over and you'll continue to be 1st gen. And so to that point, how is it that this even began pre birth? When you're thinking about generational inheritance and emotional inheritances, when you're looking for those answers, they say history doesn't repeat itself, but it often rhymes. Mhmm. Alejandra Campoverdi [00:06:35]: Well, what is the rhyme that is coming from our family? And they're not just negative. Many are positive. It's not just about generational trauma. It's about emotional inheritances and those I call them invisible inheritances. Many times they're intertwined. Many times, you know, you're looking at the fact in my instance, I have a great grandmother and a mother who both left very chaotic borderline abusive relationships while they were pregnant. Mhmm. Now that's not an inheritance that I would wanna continue. Alejandra Campoverdi [00:07:06]: Yet if you say it a little differently, I have 2 women in my family that left these relationships while they were pregnant. I mean, think of the strength and fortitude it takes to do something like that. So, I mean, I'm proud to be a a beneficiary of that inheritance. And then the third part is the inheritances that we choose to perpetuate as our own future ancestors right now. You know, every day, we have a choice to become a better ancestor. Mhmm. So those are the rhymes that not only we're coming into these lives with, but the rhymes that we're choosing to continue and be intentional about and maybe tweak a little bit. That intentionality is a lot of the end game because I don't have all the answers and this book doesn't pretend like it has all the answers. Alejandra Campoverdi [00:07:51]: But it's about validating and acknowledging a lot of what as first and only is we almost feel like we don't know have the privilege too many times. Dr. Jill Creighton [00:07:58]: I'm wondering if you can talk to us a bit about being a first generation student who entered collegiate spaces that are really legacy based institutions where maybe you're entering with classmates who have multiple generations of people who went to those institutions who know how they work, who understand the nuance and the subtleties of social culture and enter with a lot more social capital on how to engage in those worlds and how you found yourself evolving into those spaces and ultimately thriving in them. Alejandra Campoverdi [00:08:25]: Well, just how Invisible Inheritance is kind of where we start, you know, a couple steps forward is what I call chutes and social ladders. And I don't know if you remember the board game. Yeah. Yeah. Yeah. Chutes and Ladders. And the reason why I named it that was because that's what it kind of felt like to me. You know, you land on the right spot. Alejandra Campoverdi [00:08:44]: You do everything just right and you shoot into this different social class, into this different just like societal plane that feels so foreign, yet if you've messed up, God forbid don't do it just perfectly, you can backslide completely out of it. Right? Yeah. Without warning sometimes. Absolutely. And it feels really precarious. And to me, that made sense to me as a way to look at it. In the book, I talk about the familial chaos that I was in, this kind of pressure cooker, as well as in the romantic relationship that I highlight in the book. That's also something else that was, you know, leading to a lot of personal angst. Alejandra Campoverdi [00:09:25]: Mhmm. Yet the way that I was dealing with that was in a lot of ways of trying to kind of stabilize and have some semblance of control in my life by overachieving. Mhmm. You know, how that overachieving and sometimes that perfectionism can be as well as ambition, but can also be a coping mechanism for trauma. Right? And so I was making myself a really good college applicant at the same time as I was really struggling with a lot of issues around this kind of dynamics in my home and my relationships. So by the time I get to USC, it was one blurry summer apart from a very different kind of cultural experience where if anything, I was teased for, quote, acting white because I would get good grades. But then you get to college, and I remember by then, I was already struggling very much with panic attacks and panic disorder, and I had my mom be on campus with me. I grew up under 20 miles from USC's campus but had never visited. Alejandra Campoverdi [00:10:27]: You know, you don't visit colleges. Who does that? Like, what is that? So my mom is there with me pushing this running stroller around with my little sister, and I just didn't want her to be out of my sight because I felt so much pressure. Like, a lot of these students I know. I hear from them. I'm traveling around the country right now talking to them. So much pressure that not only did I have to do this to kind of this was my chance to, you know, break that cycle of poverty, but this was also my chance to help my mom, to help my family. You know, it was this kinda like double layer of stress. And my mom went to the parent orientation and I'm sitting there and feeling that, and all of a sudden, my ears start ringing. Alejandra Campoverdi [00:11:05]: Everything starts getting spinny, and I run out of Boulevard Auditorium in USC and pass out in the middle of campus. So when I came to, somebody had gone to get my mom, and we went to the health center, and then they gave me a prescription and, you know, sent me on my way. And I remember sitting on a bench with her and thinking, oh my god. Am I gonna be able to do this? I worked so hard to be able to get there, and it felt like everything was within grasp that I had dreamed of, that we had dreamed of. But I didn't know if I could physically do it because all of these experiences and these emotional experiences that we're talking about had started catching up with me. Mhmm. You know, and that's that's not something that's unique to me. Right? Because there's a saying I point to in the book, when you're skating over thin ice, your speed is your safety. Alejandra Campoverdi [00:11:52]: Mhmm. And many times that's what it feels like when you're cycle breaking and you're kind of trying to adjust to these new kinda stratosphere jumps, you don't have time to really process what's happening. You're just kind of surviving and morphing and adapting however you can. And there was a lot that was coming up for me at that time. I was fortunate that, you know, my mom was able to help me kind of navigate a little bit but in a lot of ways I ended up experiencing a whole another big jump that was difficult to recalibrate. At the time, my mom, not knowing any better, encouraged me to get involved with the Greek system. Dr. Jill Creighton [00:12:30]: Okay. Alejandra Campoverdi [00:12:30]: And we can imagine at that time, USC in the late nineties, early 2000, you know, that was like taking me to the most extreme example of kind of world jumping and recalibrating and understanding what that meant for my Latinidad and how it expressed itself on campus. How I was able to show up and fit into a system that had experiences that were beyond my comprehension and how it is that I was able to do that and manage all that while at the same time trying to keep up with grades. And it it was a lot. And I go into this a lot deeper in the book about what that felt like, but I definitely don't. And I'm not saying now nor do I say in the book that I figured it all out. Mhmm. The point was that I was white knuckling it. The point was that I was surviving in that space in those spaces as best I could, but not really understanding a lot of the dynamics that they weren't personal to me. Dr. Jill Creighton [00:13:32]: Like many women of color who are leading in new spaces, you've had transitions in this academic space, you've had transitions with health, and you've had transitions in career. So I wanna talk a little bit about your transitions in health because you're well known as a women's health advocate. When you were going through your own health transitions, how did you balance that with everything else that was going on in the world? Alejandra Campoverdi [00:13:53]: Well, I didn't know that I because I'm a BRCA mutation carrier, hereditary cancer in my family, but I didn't know that until I was in my thirties. So what I did know was that women in my family tended to all get breast cancer. And until my mom's generation, they would pass away from breast cancer. So it was especially when my mom was diagnosed and I was in my early twenties, that was a really pivotal time as far as just graduating from school and trying to figure out, I call it the lonely hustle, how to kind of go after my dreams without any safety net. Dr. Jill Creighton [00:14:28]: Mhmm. Alejandra Campoverdi [00:14:28]: When my mom was diagnosed with breast cancer, I realized I didn't really have the privilege to do that. I had a little sister that I assumed I was gonna be a single mom too. And so I went home to help take care of my mom during that time and, you know, slept on the air mattress in her living room. And as far as I was concerned, that was it. Your parents, a lot of times, you feel like they sacrifice so much for you to have these opportunities and that feels especially in the dynamics and the cultural dynamics in a lot of our communities that that's a collectivist mindset about what it means when you drop everything to be able to take care of the family unit. And so I didn't realize back then that that was something that I was also going to have to face. Mhmm. But breast cancer has been an ongoing drumbeat throughout my entire life. Alejandra Campoverdi [00:15:17]: You know, I don't go into my own journey with breast cancer in this book because this book ends before that happens. But, you know, when you're thinking about cycle breaking even with our own bodies, you know, how it is we disrupt these cycles in our families and the choice that I made to have preventative surgery at the time, not knowing that when it was after the fact of the surgery, we would discover in retrospect that actually I did have an active breast cancer already developing, which validated that choice. But all that to say is our health is another way that we're able to try to break some of these cycles. And I always say, you know, like one of the the biggest cycles that we can break and we don't always think about is to give ourselves the privilege of rest and balance and that kind of wellness on every different level because we can break cycles of poverty. We can be the first to go to college. We can be the first to have a job or buy a house or so on. But unless we do some of this inner work, one of the biggest cycles that can lead to illness in our body but for sure in our minds and our emotional health is not gonna get broken.  Dr. Jill Creighton [00:16:32]: When you think about cycle break in your own life, what advice do you give to others on how they can also engage in that work? Alejandra Campoverdi [00:16:36]: I think that the first step is to be conscious of it, to acknowledge it. And that's the energy that this book is written in for us to know ourselves and for us to know each other and for us to know that we're not alone in these experiences because a lot of it feels so isolating and a lot of it feels just really personal. And if I I've learned anything I mean, I've been to dozens of colleges now across the country. I've been really blessed to speak to so many educators as well. And it's the same experience of nodding everywhere that I go. Mhmm. Nodding in tears and acknowledgement. And sometimes people will raise their hands and I remember I was speaking in Miami, and this gentleman raised his hand. Alejandra Campoverdi [00:17:17]: He said, how do you deal with, like, the loneliness? And he started crying. And I looked out at the crowd, and I and I tell you, there were so many people crying. And I told them, I said, well, take a look around. Do you feel alone? Look at all these people that that are feeling the same thing you're feeling. And that's what the energy that this book is hopefully calling us to, which is to take a look around and acknowledge all the nodding heads. Dr. Jill Creighton [00:17:45]: I think one of the most powerful things you do in this book is give voice to a common experience that a lot of people are afraid to talk about or afraid to say out loud because we live in a capitalist society. We're fearful of being perceived as, you know, not always out in front of things sometimes. So I really appreciate that you're naming a lot of this, and it's clearly resonating with audiences around the country, and I'm sure will be very resonant for our NASPA members here, especially for our professionals who are 1st and onlys or are there 1st gen in their family to attain a university degree and then likely an advanced degree, and now we're all working in this field where a lot of people don't really understand our work. It's kind of an ongoing joke in student affairs that even our own parents don't understand what we do on a daily basis. Alejandra Campoverdi [00:18:26]: And I write about that in the book that that's a loneliness inducing experience as as well that I write about when you go home. And I mean, I would come home from the White House and I wouldn't get questions about my work, and that's at a neutral level. Then there's the hands of the students where they raise their hands and say, I'm dissuaded from doing these things. They're told, like, why are you doing this? Why don't you get a more job where you make more money? Why would you study abroad? That's a waste of your time. Almost kind of getting this negative messaging. But to your point, that's why I feel so honored to be speaking here at NASPA because on so many different levels, a, you guys are the ones on the ground. You guys are the ones on the ground with these students every day working so hard and doing so much to support the leaders of the future. And also because I see very clearly how many of the educators I'm speaking to are literally these students who also had the same experience. Alejandra Campoverdi [00:19:23]: You know, we get called to the work that we do, whether it's writing books or being an educator because of something usually very personal. We're called to something because of the empathy many times that we have for experiences. And like I said earlier, the book is written not just about that part of the student experience. There's many many chapters about what happens when you're on the other side of the sausage maker, which is all of us. Dr. Jill Creighton [00:19:49]: Mhmm. Alejandra Campoverdi [00:19:50]: And you're gonna spit out the other side and you're like, okay, woah, what happened? Because there is a point where you're the arc of the first gen experience kind of concludes. That doesn't mean that you don't have ambitions for the future and you don't have all these other things you wanna accomplish, but that initial kind of ascension into breaking out of certain cycles, same things that originally was driving me? Are they the same things or have they shifted? And if they've shifted, then how is it that I show up differently? You also name feelings of imposter syndrome in Dr. Jill Creighton [00:20:31]: the book, especially when you're first invited into the White House spaces and during your process of getting top secret security clearance and all of those things. How did you work through those feelings of imposter syndrome even though you're sitting in some of the most powerful spaces in the world at that point in time and knowing that so many of our listeners are facing impostor syndrome in their own careers even though, you know, we're all qualified to be in the spaces we're in? Alejandra Campoverdi [00:20:53]: Well, one of the things that I really make a point to highlight in the book is I actually really have a problem with the idea of impostor syndrome as it was presented to me. I'll make it personal, as I've seen it be presented also in general, is the idea that it really is about this crisis of confidence singularly and not about the second part of it, the other side of the coin, which is no matter how confident we are, how it is that the way that we show up or we're received in these spaces and in these kind of constructs that is reflected back to us sometimes that we don't belong in ways that are subtle and not so subtle at times. Dr. Jill Creighton [00:21:29]: I think imposter syndrome syndrome's a system issue personally. Right? It's 2 ways. Alejandra Campoverdi [00:21:34]: Exactly. I mean, it's 2 ways. We we still have to acknowledge our contributions and show up in that space and there's systemic issues at play too. And so that's the lens through which I talk about it at that time at the White House and not just at the White House, but that nuance, I think, is helpful because I know when I used to blame myself for feeling a lack of confidence, it's not fair on top of everything else. It's also we're pointing the arrow directly back at students to just feel more confident and not acknowledging the dynamics with which they're operating. Dr. Jill Creighton [00:22:14]: Is there anything else you want our NASPA membership to hear from you today? Just that Alejandra Campoverdi [00:22:18]: I had several inflection points that I talk about in the book that really had to do with either an educator or a mentor, someone in a position of power saying something, doing something that completely changed my life. And I wasn't someone who had mentors that would follow my life for decades. You know, it was these angels that sometimes would step in and sometimes would derail, you know. Sometimes people help you in ways that are positive and negative to kinda get you back on track. Mhmm. But the point is that these people in my life and certain things they said and didn't encourage me to do changed everything. And so I like I said, my message is gratitude to this community for being the in the spaces between the bullet points because that's what I call it in the book. That's what the book is. Alejandra Campoverdi [00:23:08]: I wanted to write something that didn't just look at the bullet points on my resume or in my bio the same way that all of us have our schools and our achievements and our jobs, but that's not where the real story lies. It's really in the spaces between those bullet points and that's where you guys are. That's where the whole story goes one way or another. And so it's just expressing my gratitude for the work that you do and for the way that you're changing lives every day. Before we go to our break, I Dr. Jill Creighton [00:23:37]: would be remiss if I didn't ask how cool is it to be on Air Force Alejandra Campoverdi [00:23:40]: There's nothing cooler. Dr. Jill Creighton [00:23:43]: It's time to take a quick break and toss it over to producer Chris to learn what's going on in the NASPA world. Dr. Christopher Lewis [00:23:49]: Thanks so much, Jill. Really excited to be back in the NASPA world. And today, I am really excited to be able to share some amazing news. If you missed it, an email was sent out after the annual conference that NASPA has selected a new president. We are thrilled to share with you that the outcome of the national search of the NASPA president has concluded. And after a thoughtful and deliberate process spanning the past 6 months, the NASPA board of directors have selected Dr. Amelia Parnell as the next President of NASPA. You may know Amelia the from her work as vice president for research and policy at NASPA, a position that she's held since 2015. In this role, she has selected the association's research policy and publications portfolio, providing critical thought and support to the membership. She oversees large scale projects, represents NASPA globally, is speaking engagements in the media, and leads analysis of applicable federal and state legislation and regulatory developments. Dr. Christopher Lewis [00:24:53]: Over the past 8 years, Amelia has secured over $22,000,000 in philanthropic funding, represented NASPA through service to over 20 organizations, including the US Department of Education, and served as the chair of the governing board for the Higher Ed Equity Network and Chair of the Finance and Investment Committee for the EDUCAUSE Board of Directors. Additionally, she has led an 18 month examination of the future of student affairs, overseeing a large volunteer and staff task force and engaging in listening sessions with NASPA members. Prior to NASPA, Amelia served as Director of Research Initiatives at the Association For Institutional Research and Director of National Survey Research for the Association For Institutional Research. From 2005 to 2012, she served as education policy analyst for the Florida Legislature. Amelia has authored numerous scholarly articles and has been regularly quoted in national and trade publications. She is author of the recent book, You Are a Data Person, Strategies for Using Analytics on Campus, which has sold over 3,000 copies to date and is widely used by institutions across the country. She is also a faculty member for the Institute on ePortfolios of the American Association of Colleges and Universities. Amelia holds a BS and MBA in Business Administration from Florida A&M University and a PhD in Higher Education from Florida State University. Dr. Christopher Lewis [00:26:21]: Beyond Amelia's credentials and organizational knowledge, the search committee and the board were most impressed by her vision for continuing to position NASPA as an indispensable organization serving the student affairs profession and higher education more broadly. Her collaborative leadership style combined with her extensive experience and genuine commitment to student success set her apart in a strong and diverse field of applicants for the position. Emilia will begin her tenure as president on July 1, 2024, at which time Kevin Kruger will become president emeritus. As we continue to move toward this next chapter in NASPA's story, we wanna thank the NASPA president search committee and especially the co chairs, Betty Simmons, retired vice president of student development enrollment management at County College of Morris and Pat Whiteley, senior vice president for student affairs and alumni engagement at the University of Miami. These volunteers gave so much of their time to ensure that the next leader of NASPA would be someone who can build on the successes of the last 12 years and position the organization to help its members face the challenges that we know lie ahead. In selecting Amelia, they have done exactly that. We would also like to extend our thanks to the team at Korn Kari for their counsel and support in this search. Our largest congratulations go out to doctor Amelia Parnell, past guest of the show, and we will be having her in the future to talk about that vision for NASPA. Dr. Christopher Lewis [00:27:47]: Every week, we're going to be sharing some amazing things that are happening within the association. So we are going to be able to try and keep you up to date on everything that's happening and allow for you to be able to get involved in different ways, because the association is as strong as its members. And for all of us, we have to find our place within the association, whether it be getting involved with a knowledge community, giving back within one of the the centers or the divisions of the association. And as you're doing that, it's important to be able to identify for yourself where do you fit? Where do you wanna give back? Each week, we're hoping that we will share some things that might encourage you, might allow for you to be able to get some ideas that will provide you with an opportunity to be able to say, Hey, I see myself in that knowledge community. I see myself doing something like that. Or encourage you in other ways that allow for you to be able to think beyond what's available right now, to offer other things to the association, to bring your gifts, your talents to the association and to all the members within the association. Because through doing that, all of us are stronger and the association is better. Tune in again next week as we find out more about what is happening in NASPA. Dr. Jill Creighton [00:29:12]: Chris, thank you so much for this week's edition of NASPA World. We always appreciate you keeping us updated on what's going around in and around NASPA. And, Alejandra, we have our lightning round questions now. I've got 7 questions for you in about 90 seconds. Alejandra Campoverdi [00:29:26]: Okay. Let's go. Dr. Jill Creighton [00:29:27]: Alright. Question number 1. Since you are a conference keynote speaker, if you got to choose your entrance music, what would it be? Alejandra Campoverdi [00:29:33]: Well, I don't know if it's a known fact but First Gen has a playlist cause each chapter title is a song. So I'm gonna pick one of the songs off of the playlist which is Fast Car, Tracy Chapman version though. Dr. Jill Creighton [00:29:46]: Oh, she just performed recently. Alejandra Campoverdi [00:29:47]: Oh, so good. Dr. Jill Creighton [00:29:47]: Love her. So good. I'm gonna sidetrack us and say where can people find your playlist? Alejandra Campoverdi [00:29:51]: It's on Spotify and in the back of the book, there's a link. Dr. Jill Creighton [00:29:54]: Alright. Number 2, when you were 5 years old, what did you wanna be when you grew up? Alejandra Campoverdi [00:29:58]: When I was 5 years old, I wanted to be Cinderella. I actually write about that in the book. Dr. Jill Creighton [00:30:05]: Number 3, who's your most influential professional mentor? Alejandra Campoverdi [00:30:08]: My most influential professional mentor was my boss at the White House for a lot of reasons and I I actually there's a whole scene in the book about the way she modeled to me what true leadership was like and really had the power to be able to either support me or not support me in a very pivotal moment at the beginning of the book. And she, to this day, is somebody who's still in my life and threw me a book party when the book came out, which meant a lot. So I would have to say her. Dr. Jill Creighton [00:30:38]: Number 4, your essential higher education read. I'd be remiss Alejandra Campoverdi [00:30:41]: if I didn't say 1st gen. Come on. Dr. Jill Creighton [00:30:43]: Number 5, the best TV show you binged during the pandemic. Alejandra Campoverdi [00:30:47]: I watched Breaking Bad again. Dr. Jill Creighton [00:30:48]: Number 6, the podcast you've spent the most hours listening to in Alejandra Campoverdi [00:30:51]: the last year. So because I actually, over the past year, have been so crazy promoting the book. I haven't listened to a lot of podcast. I'm gonna give a shout out to this one. Dr. Jill Creighton [00:31:00]: Thank you. Alejandra Campoverdi [00:31:02]: So SA Voices from the Field. Dr. Jill Creighton [00:31:04]: And finally, any shout outs you'd like to give personal or professional? I just like to Alejandra Campoverdi [00:31:08]: thank the NASPA family for welcoming me and of course to Dina over at the First Gen Center. I've had such an incredible experience getting to know folks in this world and a lot of the folks in student affairs and 1st gen programs. And so shout out to everyone here and the work that they're doing and to you for having me. I appreciate it. Again, the Dr. Jill Creighton [00:31:28]: book is First Gen, a memoir by Alejandra Campoverdi. You can pick it up in the NASPA bookstore or wherever you buy books. Now if folks would like to book you for a speaking tour on their campus or reach you otherwise, how can they find you? Well, Alejandra Campoverdi [00:31:40]: I'm super in my DMs. So you could DM me on Instagram or send me a LinkedIn message or on my website. There's an email that you can also reach out to me there. Dr. Jill Creighton [00:31:50]: And what's your website? Alejandra Campoverdi [00:31:51]: Alejandracampoverdi.com. Thank you Dr. Jill Creighton [00:31:54]: so much, for sharing your voice with us today. Thank you. This has been an episode of Student Affairs Voices from the Field, a podcast brought to you by NASPA. This show continues to be possible because you choose to listen to us. We are so grateful for your subscriptions and your downloads and your engagement with the content. If you'd like to reach the show, please email us at sa voices at nasa dotorg or find me on LinkedIn by searching for doctor Jill L. Creighton. We always welcome your feedback and your topic and guest suggestions. Dr. Jill Creighton [00:32:26]: We'd love it if you take a moment to tell a colleague about the show and give us a 5 star rating on Apple Podcasts or wherever you're listening now. It really does help other student affairs professionals find the show and helps raise the show's profile within the larger podcasting community. This episode was produced and hosted by doctor Jill Creighton, that's me, produced and audio engineered by doctor Chris Lewis. Special thanks to the University of Michigan Flint for your support as we create this project. Catch you next time.

We relaunch the OmicsXchange podcast with a new season, featuring genomics initiatives that are making an impact on communities. In this first episode of season 2, we speak with James Hildreth Sr., President and CEO of Meharry Medical College, and Lyndon Mitnaul, Executive Director of Research Initiatives at the Regeneron Genetics Center. Hildreth and Mitnaul lead a new multi-institution project called Together for CHANGE, which aims to sequence the African American genome and build capacity to overcome inequities in STEM careers.

Internationally respect oncologists with deep expertise in lung cancer in the Middle East discuss, in Arabic, the role of smoking in lung cancer as well as how new targeted therapies and immunotherapies assist oncologists as they treat patients with lung cancer.

Internationally respect oncologists with deep expertise in lung cancer in the Middle East discuss, in Arabic, the role of smoking in lung cancer as well as how new targeted therapies and immunotherapies assist oncologists as they treat patients with lung cancer.

September 14, 2023 - Dr. Melur Ramasubramanian, the recently appointed executive vice chancellor for academic affairs and provost of the state university system and president of the SUNY Research Foundation, explains his role in spearheading research growth at the state's public colleges and universities.

Commentary by Dr. Valentin Fuster

Explore the fascinating world of Military Medicine research and ethics with our special guest, retired Army Nurse Corps Colonel Dr. Laura Brosch. As the Assistant Vice President of Research Initiatives and Compliance at the Uniformed Services University of the Health Sciences, Dr. Brosch shares her journey into Military Medicine and experiences developing ethical protocols for conducting research in combat theaters. From the development of Theater Clinical Practice Guidelines to the introduction of novel treatment modalities for combat casualty care, you'll gain incredible insight into the challenges and advancements in Military Medicine. Discover how the Special Medical Augmentation Response Team (SMART) and the military's use of Investigational New Drugs (INDs) are crucial in modern Military Medicine. Dr. Brosch discusses the importance of regulatory compliance when administering these drugs and highlights the advancements in surgical products like combat gauze, Chitosan powder, and much more. Learn how these products were safely fielded in high OP TEMPO environments and understand the unique challenges faced when setting up a research capability in theater. Join us as we delve into the Joint Trauma System and the Theater Clinical Practice Guidelines developed under Colonel Paul Cordts' guidance. Dr. Brosch shares the ethical considerations taken into account when deciding which protocols to implement, such as DVT prophylaxis, tourniquet use, hypothermia prevention, and concussion awareness. Hear about the challenges of collecting data in the chaos of combat and the processes used to obtain DOD-required waivers and approvals for hospital trauma research. This conversation offers a unique perspective on the complex ethical considerations of conducting medical research in the military. Don't miss this enlightening discussion! Chapters: (0:00:00) - Military Medicine Research and Ethics (0:10:11) - Medical Research in Theater (0:26:40) - Trauma Research Guidelines and Waivers (0:41:14) - Military Medical Research and Ethics   Chapter Summaries: (0:00:00) - Military Medicine Research and Ethics (10 Minutes) We speak with Dr. Laura Brosch, a retired Army Nurse Corps Colonel and Assistant Vice President of Research Initiatives and Compliance at the Uniformed Services University of the Health Sciences. We discuss her pathway into Military Medicine and how she became the nursing research consultant to the Surgeon General. She shares how the Medical Research And Material Command played an early role in OAF and OEF, and how a plan was developed to ethically conduct research in combat theaters. Laura also explains how Theater Clinical Practice Guidelines were developed and how they've evolved over the past 20 years, and how the military brings novel treatment modalities for combat casualty care to the battlefield.   (0:10:11) - Medical Research in Theater (16 Minutes) Dr Laura Brosch and I discussed the Special Medical Augmentation Response Team (SMART) and the military's use of Investigational New Drugs (INDs). We explored the responsibility of SMART and the importance of regulatory compliance when administering these drugs. We also examined the advancements made in surgical products like combat gauze, Chitosan powder, and other products, and how they were safely fielded in a high OP TEMPO environment. Lastly, we talked about the need to set up a research capability in theater and the unique challenges this presented.   (0:26:40) - Trauma Research Guidelines and Waivers (15 Minutes) We discuss the Joint Trauma System and the Theater Clinical Practice Guidelines they developed, Colonel Paul Cordts' involvement in bringing these guidelines to life, and the ethical considerations taken into account when deciding which protocols to implement. Specific protocols such as DVT prophylaxis, tourniquet use, hypothermia prevention, and concussion awareness are discussed. The challenges of collecting data in the chaos of combat and the processes used to obtain DOD-required waivers and approvals for hospital trauma research are also discussed.   (0:41:14) - Military Medical Research and Ethics (7 Minutes) We talk with Dr Laura Brosch about the complex ethical considerations of conducting medical research. We explore the protocol she developed to allow the use of investigational products in the event of combat casualties. We discuss the regulation changes and how our research community has become more sophisticated. We also discuss the special rules for military service regarding research protections, and Laura shares her experiences as Assistant Vice President of Research Initiatives and Compliance at the Uniformed Services University of the Health Sciences. Finally, we reflect on her contributions to Military Medicine and the importance of ethical conduct in research.   Episode Keywords: Military Medicine, Research Ethics, Army Nurse Corps, Uniformed Services University, SMART, Investigational New Drugs, Combat Gauze, Chitosan Powder, Joint Trauma System, Theater Clinical Practice Guidelines, DVT Prophylaxis, Tourniquet Use, Hypothermia Prevention, Concussion Awareness, Regulatory Compliance, Research Capability, DOD Waivers, Research Protections Hashtags: #wardocs #military #medicine #podcast #MilitaryMedicine #CombatCasualtyCare #ResearchEthics #SMARTteam #InvestigationalNewDrugs #SurgicalAdvancements #JointTraumaSystem #CombatMedicine #Research   Honoring the Legacy and Preserving the History of Military Medicine   The WarDocs Mission is to honor the legacy, preserve the oral history, and showcase career opportunities, unique expeditionary experiences, and achievements of Military Medicine. We foster patriotism and pride in Who we are, What we do, and, most importantly, How we serve Our Patients, the DoD, and Our Nation.   Find out more and join Team WarDocs at https://www.wardocspodcast.com/ Check our list of previous guest episodes at https://www.wardocspodcast.com/episodes   Listen to the “What We Are For” Episode 47. https://bit.ly/3r87Afm WarDocs- The Military Medicine Podcast is a Non-Profit, Tax-exempt-501(c)(3) Veteran Run Organization run by volunteers. All donations are tax-deductible and go to honoring and preserving the history, experiences, successes, and lessons learned in Military Medicine. A tax receipt will be sent to you. WARDOCS documents the experiences, contributions, and innovations of all Military Medicine Services, ranks, and Corps who are affectionately called "Docs" as a sign of respect, trust, and confidence on and off the battlefield, demonstrating dedication to the medical care of fellow comrades in arms.     Follow Us on Social Media Twitter: @wardocspodcast Facebook: WarDocs Podcast Instagram: @wardocspodcast LinkedIn: WarDocs-The Military Medicine Podcast

Listen to this live podcast from the 2023 Oncology Nursing Society (ONS) Congress with Doyle Bosque, RN, CNML!

Today, Hunter sat down with Marea Beeman, Director of Research Initiatives for Defender Legal Services at the National Legal Aid and Defender Association (NLADA), to discuss their recent report, “At What Cost? Findings from an Examination into the Imposition of Public Defense System Fees.   If you ask the average person what the word “free” means, they will likely tell you it means whatever is considered “free” does not have any cost associated with it. So, when people hear, “If you cannot afford counsel, one will be appointed to you at no cost to yourself”, people would likely assume that this attorney is “free”. Anyone who is familiar with our legal system, however, will inform you that you will likely have to pay for your Public Defender. In fact, in many states, the first time you appear before a judge, that judge will make clear to you that your counsel will cost you.   From a top-down look at all 50 states, to deep dives into the Public Defender fees in Oklahoma, Iowa, and New Hampshire, Marea and Hunter discuss the various ways these fees trap people in never ending cycles of debt that can lead to future incarceration, loss of driving privileges, and work to perpetuate a broken, predatory legal system   Guests:   Marea Beeman, Director of Research Initiatives for Defender Legal Services at the National Legal Aid and Defender Association (NLADA),   Key Topics and Takeaways: How Marea got into this work [8:00]   What is the NLADA [9:30]   What do you mean my “free attorney” isn't free [10:30]   Difference Between Fines and Fees [14:20]   Methodology of the Study [17:50]   The Issues with Indigency Determination [21:00]   Findings from Oklahoma [26:13]   Findings in Iowa [39:40]   Findings in New Hampshire [53:00]   Solutions to the Issue [57:00]     Resources: NLADA Report   NY Times Report on Alabama Fees and Fines   Alabama Appleseed Report   Fuller v Oregon (SCOTUS found there is a legitimate interest in states recovering the cost of representation)   Bearden v Georgia       Follow NLADA on Twitter     Contact Hunter Parnell:     hwparnell@publicdefenseless.com   Instagram   Twitter   www.publicdefenseless.com  

The episode features CEO and Momma Bird of Little Bird Marketing - Priscilla McKinney. Priscilla joined us on the show to talk about: - The importance of understanding the context we're in and the biases we bring to our market research projects, as these can influence the outcomes. - The need for us to retain our humanity at each step of the market research journey so we respect everyone's time and contribution, which will lead to greater long-term outcomes and insights.  - The need of having different standards for both brands and the industry when it comes to qualitative and quantitative research. - We looked into some of the key differences between reasons as to why we need to have different standards, as well as the role that brands and the industry play in shaping and adopting these standards. - We explored some of the challenges that we face in achieving success in this area. - And we finished on what success looks like for those in the profession when we get these best practices in place. Enjoy the show.

“I do worry that I am not talented enough all the time. This is something that goes through my head a lot.” (Emma, professional tennis player) In this episode we unpack one of the largest and most comprehensive international studies done to date on gender stereotypes and their impact on girls: “The stereotype that girls lack talent: A worldwide investigation”,published in Science Advances in March of this year. The study provided an indepth look at the global impact of deeply embedded gender stereotyping and offered significant evidence that girls are overwhelmingly more likely than boys to attribute their failures to a lack of talent. Said another way, girls may be the ones holding themselves back. Natalie Demers, the Director of Research Initiatives and Programs for the International Association of Girls Schools, joins host Trudy Hall to discuss the stark results and offer insights for parents and educators to help confront gender stereotyping head on.The reality is that it is the mindset of a young woman that matters most as she heads out into the world to break barriers, and the good news is that there is much that the adult role models in girls lives can do to help girls push through and beyond stereotypical boundaries. The resources you need to know about: NCGS: https://www.ncgs.org/research/ (we are promoting this Episode as being produced by ICGS…should we still be using this website? I think we have to, but I thought I would raise the issue. Another option: I could put the link to the Global Action Research Fellows as that is referred to quite a bit in the Episode. The Stereotype that Girls Lack Talent: A worldwide investigation; Science Advances: https://www.science.org/doi/pdf/10.1126/sciadv.abm3689 The Stereotype that Girls Lack Talent: A worldwide investigation · · Transcript.pdf — PDF (140.1 KB)

“I do worry that I am not talented enough all the time. This is something that goes through my head a lot.” (Emma, professional tennis player) In this episode we unpack one of the largest and most comprehensive international studies done to date on gender stereotypes and their impact on girls: “The stereotype that girls lack talent: A worldwide investigation”,published in Science Advances in March of this year. The study provided an indepth look at the global impact of deeply embedded gender stereotyping and offered significant evidence that girls are overwhelmingly more likely than boys to attribute their failures to a lack of talent. Said another way, girls may be the ones holding themselves back. Natalie Demers, the Director of Research Initiatives and Programs for the International Association of Girls Schools, joins host Trudy Hall to discuss the stark results and offer insights for parents and educators to help confront gender stereotyping head on.The reality is that it is the mindset of a young woman that matters most as she heads out into the world to break barriers, and the good news is that there is much that the adult role models in girls lives can do to help girls push through and beyond stereotypical boundaries. The resources you need to know about: NCGS: https://www.ncgs.org/research/ (we are promoting this Episode as being produced by ICGS…should we still be using this website? I think we have to, but I thought I would raise the issue. Another option: I could put the link to the Global Action Research Fellows as that is referred to quite a bit in the Episode. The Stereotype that Girls Lack Talent: A worldwide investigation; Science Advances: https://www.science.org/doi/pdf/10.1126/sciadv.abm3689 The Stereotype that Girls Lack Talent: A worldwide investigation · · National Coalition of Girls' Schools · Transcript.pdf — PDF (140.1 KB)

On February 2nd, the White House announced that President Biden reignited the Cancer Moonshot with renewed White House leadership of this effort. In addition, Congress is moving forward with legislation to create the Advanced Research Projects Agency for Health (ARPA-H). Meg Gilley, Amy Kelbick and Sheila Madhani join our breakroom discussion on the road ahead for biomedical research.

Accurate, reliable data allow us to fully understand the health of perinatal people and their babies. Especially with the pandemic's impact on maternal health, data are critical in providing a robust understanding of the support needed by birthing persons. Unfortunately, the current patchwork system of funding data collection is jeopardizing our understanding of maternal health outcomes in our state. More than ever before, we need these data to inform our policy solutions, work toward more equitable maternal health outcomes, and ultimately create a state where all birthing persons and their children have the resources they need to thrive.    Today's episode of The West Steps features a first-ever conversation on maternal health data collection in Colorado. We are joined by Sarah Hughes, Vice President for Research Initiatives at the Colorado Children's Campaign; Susan Hwang, neonatologist and health services researcher at Children's Hospital Colorado; and Erin Miller, Vice President of Health Initiatives at the Colorado Children's Campaign. The discussion opens up with the importance of collecting data about birthing people and children, as well as the primary means for data collection in our state. By establishing a well-funded, robust data surveillance system, we can better measure systems change in the maternal health landscape. Though our state and nation face a maternal mortality crisis, we are hopeful that we can make strides in changing that during the 2022 legislative session. Cover All Coloradans – a recently introduced bill – not only aims to provide better health care to individuals across the state, it also includes a more reliable funding stream for one of the state's best programs for collecting maternal health data— the Health eMoms survey.  If you are interested in participating in advocacy efforts for Cover All Coloradans, or want to learn more about the bill, contact Erin Miller at erin@coloradokids.org. Look for more updates on Cover All Coloradans in our weekly KidsFlash newsletter. Subscribe today! Support the show (https://www.coloradokids.org/)

In Part V of our landmark series on rural higher education and workforce development, produced in collaboration with and supported by the Asscendium Education Group, Michelle chats with Danielle Vetter, Senior Program Officer and Kirstin Yeado, Program Officer, at Ascendium Education Group, both supporting partnerships focused on rural education and workforce training; Emily Cole, a higher education researcher and a Project Director with Sova; and Dr. Allen Pratt, Executive Director of the National Rural Education Association (NREA). The riveting discussion focuses on Ascendium's research initiatives, including its rural postsecondary education agenda and partnerships; themes and stories that informed the agenda; what rural leaders and communities can take away from the agenda; and NREA's rural research projects. This episode and the entire series is sponsored  by the Ascendium Education Group, a nonprofit organization committed to helping learners from low-income backgrounds reach their educational and career goals.  For more information, visit ascendiumphilanthropy.org.

In this episode, guest Alex Wakefield, CEO of supply chain technology firm Longbow Advantage, discusses the need for better supply chain visibility. He suggests that improvements in visibility for warehouse operations can actually provide better insights into bottlenecks and challenges in the transportation of goods to and from facilities.The American Transportation Research Institute, better known as ATRI, has released a report on the most important issues facing the trucking sector. Labor, of course, is a top concern. The report details some of the research that will be conducted to help trucking firms deal with driver shortages as well as the impact of electric trucks coming to the market.New technologies continue to impact the supply chain industry daily. But what are the top priorities for logistics executives in wading through all of the offerings that suppliers provide? A new report lists the key technology trends that executives plan to address this year.Articles and resources mentioned in this episode:Longbow AdvantageTrucking group to research labor issues like younger drivers, legalized marijuana, and in cab camerasReport: AI, machine learning are top priorities for logisticsDC VELOCITY's Covid-19 coverageVisit DCVelocity.com for the latest news. Send feedback about this podcast to podcast@dcvelocity.com.Podcast sponsored by SofteonOther linksAbout DC VELOCITYSubscribe to DC VELOCITYSign up for our FREE newslettersAdvertise with DC VELOCITYTop 10 Supply Chain Management Podcasts

Chris Nowinski, Ph.D., is co-founder and CEO of the Concussion Legacy Foundation, a non-profit organization leading the fight against concussions and chronic encephalopathy (CTE) and dedicated to improving the lives of those impacted.  He is the author of the investigative book, "Head Games: Football's Concussion Crisis" which is also a documentary. Dr. Nowinski earned his doctorate in Behavioral Neuroscience from Boston University School of Medicine and has authored more than 30 scientific publications. Chris Nowinski was an All-Ivy Harvard football player before becoming a WWE professional wrestler. His athletic career ended after a kick to the chin in a WWE match caused Post-Concussion Syndrome. The lessons he learned while being treated by Dr. Cantu inspired him to commit his life to serving patients and families affected by brain trauma.  Chris shares his inspiring story, clarifies the differences between Concussions and CTE, and discusses the Concussion Legacy Foundation’s Project Enlist Research Initiative focusing on CTE, Traumatic Brain Injury (TBI), and Post-Traumatic Stress Disorder (PTSD) in military Veterans.  We talk about the tragic high-profile incidents involving former athletes, death by suicide, available support for those who are suffering with brain injuries, the alliance with the Wounded Warrior Project, and a new Brain Health Initiative about to be released. Also, I pledged my brain.  

Choosing a college or university is one of the most important decisions we make in life. It is also one of the most challenging decisions we will ever face. With so many options available and issues to consider, the process can seem overwhelming. In this podcast, I discuss many of the issues to consider with Dr. David Wunder, Dean of Faculty Development and Research Initiatives at Calvin University. Dr. Wunder became serious about his faith as a sophomore in high school and headed off to college eager to grow both intellectually and spiritually. He chose to attend a small public university for his Bachelor of Science degree (Missouri University of Science and Technology). From there he attended large public universities for his Master of Science degree (University of Iowa) and his Ph.D. (University of Minnesota). In all three universities, he found ways to flourish in his faith and excel academically. He has now been on the faculty at Calvin University, a Christian university since 2004 (for more see his Calvin University Faculty Profile.). Here in this Christian college context, he has also seen many students flourish.  In our conversation, Dr. Wunder shares his insights concerning the pros and cons of both secular and Christian college education, and how to thrive in both contexts. He also provides a wealth of information about what to consider when choosing a college, sure to be helpful to all prospective college students and their parents as they wrestle with this momentous decision. In this podcast we discuss:  The benefits of attending a Christian college or university The challenges of attending a Christian college or university How to evaluate a college or university during a campus visit How to thrive as a Christian at a secular university How to find a healthy Christian fellowship on campus The challenges of attending a secular college or university Other ways Christian students can thrive in a secular context How to discern which college or university is best for you/your son or daughter   Further thoughts on how to maximize a campus visit How to find information about graduation and placement percentages How to avoid unnecessary stress in the selection process The two ways to think about how to choose a college  Resources mentioned during our conversation: Universities with Christian Study Centers Council for Christian Colleges and Universities College Confidential 

Curious about the research funded through the NPF? Hear about key research initiatives such as the PsA Diagnostic Test Grant and the Psoriasis Prevention Initiative along with the latest updates from Dr. Stacie Bell, Chief Scientific and Medical Officer, and Jackie Domire, Associate Director of Research and Medical Affairs. Psound Bytes is supported by unrestricted educational grants from Amgen, Bristol Myers Squibb, Pfizer and UCB. 

Text Me: (949) 415-6256 My podcast is Random Musings From The Clinical Trials Guru Listen on Spotify: https://open.spotify.com/show/7JF6FNvoLnBpfIrLNCcg7a GET THE BOOK! https://www.amazon.com/dp/1090349521/... Text "guru" to 31996 to join VIP list! My blog: http://www.TheClinicalTrialsGuru.com My business Patreon Page: http://www.patreon.com/dansfera My CRO and Site Network: http://www.DSCScro.com My CRA Academy: http://www.TheCRAacademy.com My CRC Academy: http://www.TheCRCacademy.com

http://housing.uoregon.edu/communities http://uess.uoregon.edu In today’s episode we discuss first-year experiences like Academic Residential Communities, and the opportunities for students to enrich both their residential and academic experiences from the start. We’ll also explore the ways students can expand their academic exploration by being involved in our many undergraduate research opportunities. Today’s guests are Kevin Hatfield, Assistant Vice Provost for Undergraduate Research, and Director of Academic Residential and Research Initiatives; and Lanch McCormick, Director of Student Engagement, Division of Undergraduate Education and Student Success.

Dr. West speaks with Dr. Ross Camidge about the experience of contributing to the NCCN guidelines, developing the ATOMIC network as a novel platform for lung cancer research, & the increasing importance of online patient molecularly defined groups.

Dr. West speaks with Dr. Ross Camidge about the experience of contributing to the NCCN guidelines, developing the ATOMIC network as a novel platform for lung cancer research, & the increasing importance of online patient molecularly defined groups.

The U.S. Constitution requires an “enumeration” of every person living here every 10 years. It takes you a few minutes to fill out your census form, but it takes our federal government a full decade to gear up to count us all. Everyone—especially young children—need to be counted to ensure our political, financial, social and government systems are equally applied across our country. Listen in as our VP for Research Initiatives, Sarah Hughes, blows your mind with the scale, significance and high stakes of the 2020 Census.Support the show

One of the biggest challenges with AI is making sense of the decisions made by black box machine learning algorithms. In this episode of the AI Today podcast, hosts Kathleen Walch and Ronald Schmelzer interview Steve Eglash, Executive Director of Strategic Research Initiatives in the Computer Science Department at Stanford University to discuss Explainable AI, Responsible AI, and how to get AI systems to behave in a more testable, provable, and error-free way. Read more ...

Edgardo Sanabria-Valentín, Ph.D. is the Associate Program Director for PRISM (Program for Research Initiatives in Science and Math) and also the Pre-Health Careers Advisor at John Jay College of Criminal Justice. He is the recipient of the ESCMID Young Scientist Award (2007), a Leadership Alliance-Schering Plough Graduate Fellowship (2006), and the NBHS-Frank G. Brooks Award for Excellence in Student Research (2001). He is also a founding member of the NYC-Minority Graduate Student Network and The Leadership Alliance Alumni Association.

Rachel Bar is a Canada's National Ballet School Alumni, the Manager of the Health and Research Initiatives and the Sharing Dance With People With Parkinson’s program.   Sharing Dance With People With Parkinson’s is a program that is run at no cost to the participants. The combination of mobility, getting exercise and participating in a social setting has many benefits for people with Parkinson’s. The creative and artistic component also allows the participants to express themselves where they may have lost that ability in other areas of their life.     Thank you to Karlee Vukets for choosing Sharing Dance With People With Parkinson’s as her recipient in the One Million Ten Million Project and helping to raise awareness for this amazing program.      To support and connect with Sharing Dance With People With Parkinson’s go to: nbs-enb.ca       For more information on the One Million Ten Million Project go to: 1m10mproject.com 

Rachel Bar is a Canada's National Ballet School Alumni, the Manager of the Health and Research Initiatives and the Sharing Dance With People With Parkinson’s program.     Sharing Dance With People With Parkinson’s is a program that is run at no cost to the participants. The combination of mobility, getting exercise and participating in a social setting has many benefits for people with Parkinson’s. The creative and artistic component also allows the participants to express themselves where they may have lost that ability in other areas of their life.     Thank you to Karlee Vukets for choosing Sharing Dance With People With Parkinson’s as her recipient in the One Million Ten Million Project and helping to raise awareness for this amazing program.       To support and connect with Sharing Dance With People With Parkinson’s go to: nbs-enb.ca       For more information on the One Million Ten Million Project go to: 1m10mproject.com  .    

Dr Kennedy talks to ecancertv at the 10th NCRI Cancer Conference (NCRI 2014) about some of the collaborative research initiatives that NCRI (the National Cancer research Institute) promotes and facilitates and why they are so important.

Coming up on Biotechnology Focus Radio : The future of made-in-Canada CAR-T cells looks bright, Roche Canada and Merck each launch their own individual collaborative cancer research initiatives, and using immunotherapies to kill brain cancer Welcome to another episode of Biotechnology Focus Radio. I’m your host Shawn Lawrence, here to give you a rundown of this week’s top stories on the Canadian biotech scene. As you can tell by our teaser intro, cancer research and new initiatives into new therapies to tackle the disease figure prominently in our news headlines this week, and this is not a coincidence as February happens to be National Cancer Prevention Awareness Month. Story 1 On that note, our first story takes us to Ottawa, ON, where a team of researchers at the Children’s Hospital of Eastern Ontario (CHEO) have made a discovery, featured in Nature, center around a promising combination of immunotherapies that are able to deliver a one-two punch to brain cancer tumours in mice.  Led by Dr. Robert Korneluk, distinguished professor at the University of Ottawa and senior scientist at the CHEO Research Institute, the Ottawa reseach team was able to show in mice that a combination of drugs known as SMAC Mimetics and immune checkpoint inhibitors (ICIs) amplifies kill rates of cancer tumour cells in laboratory testing. The research team also discovered a new mechanism by which the combination promotes long-term immunity against glioblastoma tumours. The combination therapy also proved to be highly effective against breast cancer and multiple myeloma. According to Dr. Korneluk, these findings represent a significant evolution in the field of immunotherapy, for the first time showing the synergistic tumour-killing impact of combining SMAC Mimetics with immune checkpoint inhibitors for glioblastoma. As part of this latest project SMAC Mimetics known as LCL161 and Birinapant were combined with ICI antibodies targeting PD-1 and CTLA-4 immune checkpoints. The findings have their roots in research conducted back in 2014, when a team of scientists led by Dr. Korneluk discovered that combining SMAC Mimetics with immune stimulators or live virus therapies had a synergistic or amplified tumour-killing effect that was greater than either agent on its own. Today’s news shows that SMAC Mimetics also have a powerful synergistic effect with ICIs, relatively new drugs that are showing great promise in the clinic. Eric Lacasse, a scientist at the CHEO Research Institute, adds that two drug companies have initiated human clinical trials this year to assess the impact of this combination of SMAC Mimetics and ICIs on patients with a variety of cancers. Although it could be years before any clinical trials begin for adults or children with the deadly brain cancer, glioblastoma, we’re looking forward to seeing how scientific evidence from these experimental treatments adds to our knowledge. It’s an exciting, exploratory field and we hope we’ve hit a home run.” Shawn Beug was the lead author of both the 2014 and 2017 papers, and the research was funded by the Canadian Cancer Society Research Institute, Brain Canada (with financial support from Health Canada through the Canada Brain Research Fund) and the Canadian Institutes of Health Research. In addition, the work was supported by donations to the Ottawa Regional Cancer Foundation, the Kiwanis Medical Foundation and the CHEO Foundation. Story 2 Continuing with the Cancer Research theme, Hoffmann-La Roche Limited (Roche Canada) reports that Toronto’s Princess Margaret Cancer Centre has joined the company's global cancer immunotherapy Centres of Research Excellence (imCORE) Network. The network brings together the world's leading scientific and clinical experts in cancer immunotherapy to collaborate on the investigation and development of promising new treatment approaches for the disease. As part of gaining a better understanding immune biology and cancer, and to ultimately improve treatment options, this includes initiating pre-clinical and clinical research based on the latest scientific discoveries in cancer immunotherapy and to aggregate, as well as share data within the Network to help accelerate research for people living with cancer.  The imCORE Network is comprised of 21 academic centres, inclusive of Princess Margaret Cancer Centre, from nine countries across the globe.   Dr. Lillian Siu, medical oncologist at Princess Margaret Cancer Centre and Site Lead for the imCORE Network explains why the imCORE newtwork is exciting in the follow audio clip. http://stream1.newswire.ca/media/2017/02/14/20170214_C8704_VIDEO_EN_881863.mp4 As a part of a global announcement regarding the launch of the imCORE Network, Roche has also made a commitment to invest up to 100 million Swiss Francs (more than $130 million Canadian dollars) to support basic and clinical research collaborations related to cancer immunotherapy. Story 3 In an exciting public/private partnership, stakeholders in Quebec have launched a new research, development and investment hub to help accelerate the fight against cancer. The hub, called Oncopole is backed by a $15-million investment by Merck that will be administered over three years and overseen by the Fonds de recherche du Québec – Santé (FRQS). Through its model, Oncopole brings together various stakeholders under one flagship hub in oncology. It’s conception was structured with the involvement of more than 50 experts from the scientific community over the past year, who helped to identify its priorities. Recognizing the range of resources and infrastructures currently available as well as the strategic positioning of many researchers in Québec, the Hub will aspire to strengthen the research and innovation ecosystem in the province. Some functions of Oncopole will include enabling the incubation and creation of companies that will capitalize on innovation; and positioning cancer care in Québec among the best in the world in terms of clinical outcome, patient experience and system efficiency. Based on a thorough analysis of the various hosting possibilities identified across Québec, the Institute for Research in Immunology and Cancer (IRIC) of the Université de Montréal was selected as the establishment which will host the Oncopole’s coordinating offices. Additionally, the FRQS and Merck hope that this initial investment will attract other partners to join the Oncopole and make it a truly collaborative initiative. Story 4     Switching gears to the bioindustrial sector, the Biotechnology Innovation Organization (BIO) announces that registration and housing are now open for the 2017 World Congress on Industrial Biotechnology. The conference, now in its 14th year brings brings together from across the globe business leaders, investors, academics and policymakers in the biofuels, biobased products, renewable chemicals, synthetic biology, food ingredients and biomass sectors. Industrial and environmental biotechnology is at the forefront of the biobased economy, generating good-paying jobs and making cleaner products and processes. This year event will be held July 23-26, 2017 at the Palais des congrès de Montréal in Montréal, Canada. According to Brent Erickson, executive vice president, Industrial and Environmental at BIO, two new tracks-Flavors, Fragrances and Food Ingredients and Agricultural Crop Technologies and Biomass Supply-have been added to this year’s programming, representing the extended value chain of industrial biotechnology. He adds that the decision to bring the World Congress back to Montréal had very much to do with the success of past events, and the local industries continues support of what has grown into the world’s largest industrial biotechnology conference. In 2016, the BIO World Congress on Industrial Biotechnology drew around 907 industry leaders from 529 companies, 32 countries and 31 states, as well as the District of Columbia and hosted a record 1,961 partnering meetings. For more information on the conference visit http://www.bio.org/worldcongress. Story 4 In our final story this week, BioCanRx, and its partners, are investing $11 million to support 16 collaborative research projects in novel therapies to cure cancer. including research aimed at developing Canada’s clinical Chimeric Antigen Receptor modified T cell (CAR-T) manufacturing capabilities. Considered a powerful new tool in the fight against cancer, CAR-T is on the cutting edge of cancer therapeutics, showing promise in paediatric and adult patients with certain blood cancers such as acute lymphoblastic leukemia and lymphoma. While promising, the development of such therapies require sophisticated manufacturing and expertise. Canada currently does have the basic laboratory infrastructure in place, and with this funding could take significant steps towards fully developing the expertise and capacity required to deliver this technology. The BioCanRx investment is going to research projects that will advance several innovative engineered T cell designs, to accelerate delivery of these novel concepts into clinical testing in Canada. Dr. John Bell, Scientific Director, BioCanRx adds his CAR-T manufacturing initiative is unique in that it represents the Canadian academic community recognizing a gap and stepping up to drive Canadian solutions to meet grassroots efforts taking place in the U.S., China and Europe. He discusses CAR-T cell manufacturing in Canada in the following audio provided by BioCanRX: https://biocanrx.com/wp-content/uploads/custom%20images/BioCanRx_Dr_JohnBellCART3.mp4 To help ensure CAR-T cell therapy is brought to patients safely and effectively, BioCanRx is funding a companion Clinical, Social, and Economic Impact project. It will review the existing base of knowledge and involve patient consultation to design a rigorous CAR-T clinical trial protocol ready to implement once the products are ready for a phase 1 clinical trial. Dr. Manoj Lalu, associate scientist, assistant professor, Clinical Epidemiology and Regenerative Medicine Programs, Ottawa Hospital Research Institute, The Ottawa Hospital and Department of Anesthesiology and Pain Medicine, University of Ottawa discusses CAR-T therapy clinical trial design in the following audio clip. https://biocanrx.com/wp-content/uploads/custom%20images/Dr.%20Lalu%20-%20BioCanRx.mp4 To access the full list of the 16 projects funded, be sure to visit https://biocanrx.com/project-dashboards.   Well that wraps up another episode of the Biotechnology Focus Podcast. We hope you enjoyed it. Be sure to let us know what you think, and we’re also always looking for story ideas and suggestions for future shows, and of course we’d love to hear from you as well, simply reach out to us via twitter @biotechfocus, or by email at the following email address  press@promotivemedia.ca. And remember, you can also listen to past episodes online via our podcast portal at www.biotechnologyfocus.ca . For all of us here at Biotechnology Focus, thanks for listening.

Transcript and information regarding episode 39 of the Australian Centre for Philanthropy and Non Profit Studies.

CPNS PhD research student, Ruth Knight speaks about her current research into the organisational culture of large nonprofit organisations and their attitudes to change. Former CPNS visiting academic, Pamala Wiepking discusses the activities and initiatives of the European Research Network on Philanthropy.