Patient Leader Podcasts

Ben revisits the application of innovation to deliver healthcare transformation – this time the merging technology with social science to reward undetectability in the fight against HIV.  We meet McKinsey Copley, co-founder and CEO of Shine, who shares his journey from a young volunteer to creating a groundbreaking app that incentivizes HIV patients to remain virally suppressed by providing financial rewards. They discuss the economic and ethical implications of this approach and Shine's potential impact on ending the HIV epidemic. McKinsey also details the pilot project in Las Vegas and the regulatory challenges faced, ensuring the app's effectiveness and security. This episode is a compelling look into how innovative incentives can transform global health. Tune in for insights on compassion, technology, and the future of HIV treatment. https://www.shineapp.co/   00:00 Introduction to the Podcast 00:33 Why Focus on HIV? 01:46 Meet McKinsey Copley 02:21 McKinsey's Journey into HIV Advocacy 04:39 Founding One Tent Health 05:36 Achievements and Recognition 06:34 Introduction to Shine 07:00 The 90-90-90 Plan Explained 08:55 The Vision Behind Shine 12:34 Funding and Sustainability 16:14 Challenges and Future Plans 20:39 Choosing Las Vegas for the Pilot 21:39 The Impact of Trump's HIV Program 22:58 Shine: Tech Startup or Program Implementation? 25:01 Mission Statement: Wrapping the World in Love 27:37 Ensuring Data Privacy and HIPAA Compliance 32:35 Future Expansion and Long-Term Strategy 37:04 Call to Action: Join Shine's Journey 37:52 Contact Information and Final Thoughts   💬 Join the Conversation How do you see the future of global health unfolding? Share your thoughts in the comments!   🔔Subscribe & Stay Updated Listen on Spotify, Apple Podcasts, or your favorite podcast platform   Check out our Youtube channel for more in-depth global health discussions  https://www.youtube.com/@shotarmpodcast

In this special episode of A Shot in the Arm podcast, hosts Ben Plumley and Yvette Raphael share the exciting news of Yvette receiving the Mani L. Bhaumik Breakthrough Award from the American Association for the Advancement of Science. They discuss the significance of African women's involvement in clinical trials, particularly the Global Advisory Board’s active participation in the design of trials of new long acting injectables for HIV prevention - particularly the groundbreaking way pregnant women were, for the first time, able to continue to participate in these studies. They also delve into the current challenges faced by global health initiatives, the impact of private and governmental organizations, and the crucial role of mental health and advocacy in combating HIV. The episode addresses the ongoing impact of US funding cuts on global HIV services and the importance of maintaining global solidarity and support for effective HIV prevention and treatment. Yvette emphasizes the need for accessible, affordable HIV prevention methods and the ongoing advocacy required to ensure these advancements reach those who need them most. 00:00 Introduction and Welcome 00:16 Breaking News: The AAAS Breakthrough Award 01:44 Yvette Raphael's Journey and Achievements 03:15 The Purpose and Echo Trials 04:16 Community Involvement and Advocacy 07:46 Challenges and Triumphs in HIV Prevention 10:59 Accountability vs. Advisory Boards 16:58 Ensuring Accessibility and Affordability 22:30 Impact of Funding Disruptions 31:32 Mental Health and Psychosocial Support 33:31 Conclusion and Final Remarks 💬 Join the Conversation How do you see the future of global health unfolding? Share your thoughts in the comments! 🔔Subscribe & Stay Updated  Listen on Spotify, Apple Podcasts, or your favorite podcast platform 
Watch on YouTube & subscribe for more in-depth global health discussions – www.youtube.com/@shotarmpodcast 
 
   Episode link on Youtube: https://youtu.be/xiZpnpVScS4

In this episode we're sharing the highlights from our recent interview with Carol Steinberg, whose children’s book, Come Grandpa Meow, Let’s Fly, adds a much-needed resource for families navigating the challenges of Alzheimer’s and dementia. A Personal Story Sparked by Loss Carol’s journey began more than 25 years ago, during her own father’s struggle with Alzheimer’s. She originally wrote the book as part of her grieving process, but it wasn’t until she’d spent years working at both local and national Alzheimer’s organizations that the story truly found its shape. The finished book beautifully balances respect, understanding, and connection for readers young and old. Empowering Children & Families One thing that sets Carol’s children’s book apart is its focus on empathy, understanding, and practical intergenerational activities that help children stay connected with loved ones living with dementia. As Carol says, “We need to bust the stigmas. We need the world to know that people with dementia are still people. They're still your loved ones. They may act differently—and I hope I show that in the book.” For Adults, Too Although written for children (ages 5 to 9, but suitable for older readers too!), this book is just as impactful for adults. As Vicki Tapia, AlzAuthors acquisitions editor, noted, the story “helps explain and cope with the changes that are happening [to a loved one].” Plus, the activities at the end offer concrete, research-backed ways that families can nurture connection. Recommended by the Experts Don’t just take our word for it—Come Grandpa Meow, Let’s Fly comes with glowing endorsements from field leaders like Teepa Snow, Dr. Daniel Potts, and people living with dementia, who praise its realism, sensitivity, and stigma-busting power. Whether you’re a caregiver, educator, parent, or grandparent, Carol’s book is a gentle guide to fostering compassion, understanding, and lasting memories—no matter where you or your loved one are on the dementia journey. After the Podcast Purchase “Come Grandpa Meow, Let's Fly" Read Carol's AlzAuthors blog post Learn about the Moderators Marianne Sciucco Christy Byrne Yates About the Podcast AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys. We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here. Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here. Thanks for listening. We are a Whole Care Network Featured Podcast Proud to be on The Health Podcast Network Find us on The World Podcast Network and babyboomer.org Want to be on the podcast? Here’s what you need to know We’ve got merch! Shop our Store

Ben Plumley is joined by musician, DJ, and influencer Anto NeoSoul to explore the evolving concept of masculinity in the 21st century. Reflecting on their personal experiences and societal observations from Kenya to the UK, Ben and Anton discuss the impacts of traditional gender roles, the rise of toxic masculinity, and the importance of gender equity. The conversation delves into the influences of matriarchal societies, personal stories involving media and cultural icons, and the significance of positive male mentoring. They also touch on sensitive topics such as the relationship with firearms and the role women play in shaping a positive sense of masculinity. This engaging discussion aims to foster a broader understanding and redefine what it means to be a man today. 00:00 Introduction and Recap of Previous Episodes 01:00 Welcoming Back Anton Soul 02:04 Exploring Modern Masculinity 04:54 Personal Reflections on Masculinity 09:25 Influences and Role Models 18:51 Challenges and Evolving Gender Norms 25:35 Toxic Masculinity and Its Fragility 26:15 Conversations on Masculinity 27:33 The Influence of Media and Generational Gaps 29:36 Man Cave and Gender Roles 31:31 Mental Health and Emotional Expression 34:30 Guns and Masculinity 43:08 The Role of Women in Defining Masculinity 49:58 Conclusion and Future Conversations Watch this episode on Youtube: https://youtu.be/6552OKWsXt4 💬 Join the Conversation How do you see the future of global health unfolding? Share your thoughts in the comments! 🔔Subscribe & Stay Updated Listen on Spotify, Apple Podcasts, or your favorite podcast platform Watch on YouTube & subscribe for more in-depth global health discussions – www.youtube.com/@shotarmpodcast

🎙 On this RNegade episode, we engage in a lively discussion about the nursing profession with Michelle Harris, a retired nurse and host of the "The Conversing Nurse" podcast. The conversation highlights the challenges nurses face, including burnout and systemic issues within healthcare, particularly exacerbated by the COVID-19 pandemic. Michelle shares her journey from nursing to podcasting, emphasizing the importance of self-care and advocacy for change. The episode underscores the value of nurses, the need for systemic reforms, and the potential of podcasts as educational tools. 🎧 GET NURSING CES FOR THE EPISODE HEREhttps://rnegade.thinkific.com/courses/saying-no Introduction of Michelle Harris (00:00:02) Michelle's Podcast Journey (00:04:49) Michelle discusses her transition from nursing to podcasting and her identity as a retired nurse. Awareness of Nurse Fatigue (00:11:00) Michelle shares insights on the exhaustion and love nurses have for their profession, especially post-COVID. Common Link Among Nurses' Exhaustion (00:14:14) Michelle reflects on staffing issues, moral distress, and the toll of overwork on nurses. Personal Wake-Up Call (00:16:13) Michelle shares her experience with breast cancer and the lessons learned about self-care. Learning to Say No (00:19:06) Discussion on how Michelle learned to prioritize her health and say no without guilt after her illness. The Importance of Saying No (00:21:03) Emphasizes the necessity of taking time for oneself and learning that "no" is a complete sentence. Nursing as a Calling (00:22:00) Explores how nursing is a vocation driven by purpose rather than financial gain, affecting burnout. Operating from the Overflow (00:23:09) Discusses the importance of meaningful work in preventing burnout and maintaining energy levels. Basic Needs in Nursing (00:24:23) Highlights the lack of basic human needs being met in nursing, impacting overall well-being. Nurse Burnout and Career Shifts (00:31:33) Discusses how many nurses experience burnout and transition to non-bedside roles for better work-life balance. Crisis in Nursing Workforce (00:35:14) Addresses the hiring crisis in nursing and the need for solutions to retain staff at the bedside. The Impact of Generational Change in Nursing (00:38:40) Discussion on how younger generations challenge traditional work norms in healthcare. Courage to be Disliked (00:40:43) The importance of setting boundaries and learning to say no in the nursing profession. Sharing Experiences Post-Crisis (00:43:06) Discussion on personal growth and sharing lessons learned after health crises. Learning from Guests (00:44:51) Host reflects on the insights gained from podcast guests challenging the status quo. Expanding Podcast Topics (00:45:35) Introducing non-nursing guests to broaden perspectives and share diverse experiences. Identifying similarities in challenges faced by nurses and other first responders. Future of Nursing Education (00:54:44) Emphasizing the importance of mental health education in nursing school curricula. Returning to Basic Self-Care (00:55:23) Discussion on the importance of listening to basic human needs for health and well-being. Pioneering Nurses (00:58:15) Discussion on the importance of recognizing the value of nurses and their role in decision-making. Cognitive Dissonance in Nursing (00:58:55) Exploration of the conflict between internal values and external behaviors in nursing. Creative Endeavors in Podcasting (01:04:38) Insights into the creative process and excitement of producing the "Conversing Nurse" podcast. 👀 SEE ALL QUALIFYING CONVERSING NURSE PODCAST CE LIBRARY https://rnegade.thinkific.com/collections/conversing-nurse-podcast

Mitchell Warren, AVAC's Executive Director, joins Ben to scope out a forward-looking infectious disease   prevention strategy. It is urgently needed, amidst political and economic turmoil caused by the dismantling of US aid and declines in funding from European donors. With HIV as the poster child of what once was global health solidarity, it is an opportunity for a resurgent and resilient Global South to take the reins and set priorities in how to deploy new biomedical innovations, and protecting the rights of communities affected by HIV and other pandemics. Ben and Mitchell also delve into the various legal actions the public health community is taking against the current US administration's executive orders, asking the question - how to we prep for prevention at home and internationally?  00:00 Introduction and Current Challenges in Global Health  01:09 Welcoming Mitchell Warren and AVAC's Mission  01:43 The Evolution of HIV Prevention and AVAC's Role  03:17 Current Frustrations and Challenges in HIV Prevention  05:15 The Promise and Challenges of Lenacapavir  08:03 The Importance of Choice in HIV Prevention  10:22 Navigating Funding and Policy Obstacles  12:43 The Role of Donors and Ministries in HIV Prevention  14:56 The Urgency of Lenacapavir Approval and Implementation  20:52 Sustainability and Future Planning in Global Health  25:44 Legal Battle Against Government Orders  26:50 Temporary Restraining Order and Its Implications  27:14 Government's Slow Compliance and Ongoing Legal Struggles  28:38 Public Record and Whistleblower Revelations  30:56 Impact on American Influence and Global Health  33:45 Diplomacy and Foreign Assistance  35:04 Consequences of Policy Changes  40:01 Future Strategies and Targets for Global Health  45:51 Music and Reflections on Democracy  48:21 Conclusion and Final Thoughts  Learn more about AVAC https://avac.org   💬 Join the Conversation How do you see the future of global health unfolding? Share your thoughts in the comments!    🔔Subscribe & Stay Updated Listen on Spotify, Apple Podcasts, or your favorite podcast platform Watch on YouTube & subscribe for more in-depth global health discussions – www.youtube.com/@shotarmpodcast 

Email: Ilakkiah.Chandran@uhn.ca about this study!   Languages: English, Spanish, Portuguese and Dutch across the sites in Canada and Netherlands.   All our kids will turn into adults and if you think people don’t understand our kids, wait till they turn into adults!  It’s worse.  There are less doctors who think in terms of genetic etiology (cause), which makes the literature so much more important.  BTW, soon we will have treated and untreated!     Dr. Andrade and her team are the best in the world.  Dravet/SCN1A is “the one”   Dr. Andrade has written multiple papers on Dravet and is the world leading expert on monogenic NDDs in adults… https://pubmed.ncbi.nlm.nih.gov/33677403/ https://pubmed.ncbi.nlm.nih.gov/28186331/ https://pubmed.ncbi.nlm.nih.gov/22780858/   She’s even looking around corners… https://pubmed.ncbi.nlm.nih.gov/40034086/   We have already been given a remarkable paper on SYNGAP1 in adults, but with a very low N=14: https://pubmed.ncbi.nlm.nih.gov/38045990/.  Dr. A presented the related data at SRF Conf 2022. https://youtu.be/mRlCA816Af8   CHD2 has one now as well: https://pubmed.ncbi.nlm.nih.gov/39601014/   So there are 9,997 other genes of which at most 100 have decent PAGs which all would love Dr. Andrade and her team to do the same.  So… this is our moment.   Please let us know how we can help you to finish these questionnaires: info@cureSYNGAP1.org    Thursday, May 1, 2025 #RareDisease #AdultPhenotype #AndradeRocks #SYNGAP1 #SynGAP #French #Portuguese #Spanish #Dutch #English #Brazil #UK #Canada

In this episode of Once Upon a Gene, I’m joined again by rare mom and powerhouse advocate Gay Grossman. Gay works at GeneDx—home to one of the largest clinical genomic databases—and she’s here to share two exciting updates that could change everything for rare families and patient advocacy orgs. We talk about: GeneDx’s new commitment to the cerebral palsy community and why every CP diagnosis deserves a genetic test How families can access exome and genome testing through telehealth The launch of the Discover Snapshot, a tool designed to help rare orgs find, understand, and grow their communities using real genomic data We also dive into why many CP, autism, and epilepsy diagnoses are just the beginning—and how getting to the root cause can open doors to treatments, clinical trials, and life-changing connection. 🔗 Resources & Links: Request your Patient Count or Discover Snapshot: advocacy@genedx.com Learn more about genetic testing and CP: GeneDx.com Access testing through Genome Medical: Genome Medical Key Topics: Genetic testing access and equity Ending the diagnostic odyssey for CP Empowering patient advocacy orgs with data How to use genetic diagnoses to unlock treatment options The power of community and connection

In this podclass episode, we're talking with Dr. Gillian Ehrlich, a nurse practitioner with a doctorate and an expert in Ayurveda. Gillian shares insights on the interconnectedness of mind and body, emphasizing the impact of thoughts on physical health. She explains the Ayurvedic concepts of doshas—vata, pitta, and kapha—and their influence on individual health. The episode highlights Gillian's commitment to personalized care for comprehensive wellness. Gillian shows us how this ancient system still delivers modern solutions for nurses, patients, and humans who are totally fried. 🎙GET NURSING CES FOR THIS EPISODE HERE https://rnegade.thinkific.com/courses/ayurveda Introduction of Gillian Ehrlich (00:01:03) Gillian highlights her expertise in Ayurveda and nursing. Gillian's Background (00:02:43) Gillian shares her upbringing and early influences that shaped her career path. Introduction to Ayurveda (00:10:21) Gillian describes her first exposure to Ayurveda and its transformative effects on her teaching. Nursing as a Holistic Framework (00:12:38) Gillian explains how nursing aligns with Ayurvedic principles for holistic patient care. History of Nursing (00:13:06) Gillian discusses the historical figures in nursing and their contributions to the field. Roots of American Medicine (00:14:32) Gillian explores the origins of American medicine and its evolution over time. Flexner Report Discussion (00:16:17) The impact of the Flexner Report on the perception of homeopathy and alternative medicine. Evolution of Medical Research (00:18:15) Gillian outlines the changes in medicine due to increased funding and research in the 20th century. Neuro Immune Axis and Dysautonomia (00:21:00) Exploration of the neuro immune axis and its connection to conditions like dysautonomia and long COVID. Restoration and Rejuvenation in Ayurveda (00:23:56) Discussion on the Ayurvedic concept of Rasayana, focusing on restoration and rejuvenation. Interconnectedness of Body Systems (00:24:14) Gillian emphasizes the need to restore the integrity of the neuro immune system and its impact on health. Transition to a Functional Medicine Model (00:32:10) Gillian describes her shift to a functional medicine practice and its impact on patient care. The Philosophy Behind Ayurveda (00:40:32) Gillian provides an introduction to Ayurvedic philosophy and its relevance in modern medicine while emphasizing the neuro-immune axis. Five Elements of Ayurveda (00:42:52) Discusses the five elements in Ayurveda compared to Chinese medicine, highlighting their unique qualities. Constitution and Prakruti (00:44:01) Describes how individual constitution is formed at conception and its significance in Ayurveda. Assessing Prakruti Through Pulse (00:45:07) Explains how to assess one's constitution through the radial pulse and its characteristics. Balancing Pitta Dosha (00:47:04) Suggests dietary and lifestyle adjustments for balancing the pitta dosha based on environmental conditions. Explains the characteristics of the pitta dosha and its implications for personality and health. Vata Characteristics (00:48:06) Describes the qualities and health implications of the vata dosha, including its tendencies when imbalanced. Discusses treatments for vata imbalances, including the use of oils and dietary changes. Kapha Characteristics (00:55:19) Describes the qualities of the kapha dosha and its effects on health and personality. Discusses how imbalances in kapha can lead to various health issues, including congestion and weight gain. Patient Assessment in Ayurveda (01:01:05) Explains the holistic approach to patient assessment in Ayurveda, focusing on life history and environmental factors. Overview of Gillian's Podcast (01:07:04) Gillian introduces her podcast focused on complex health topics and neuro immune access. 🎧 SEE ALL THE QUALIFYING NEUROVEDA NURSING CE PODCASTS HERE https://rnegade.thinkific.com/collections/Gillian-Ehrlich-Neuroveda

Friday, April 25, 2025 - DNA Day Good luck at Sprint tomorrow.  $194k at this moment.   WODC Readout Saw friends (Hebbian Bio, Unravel, Ana M, Balaji) and families (HM AN E) RH Drug talk - https://youtu.be/Hpj72nMFfZc?si=dLVdeRNhVLfjCSar. (Other  Family Day Presentations from SYNGAP1 Conference in LA are on YouTube https://www.youtube.com/playlist?list=PLjpr3a14_ls2ummdbWyUdvRpMcQBlRXy2)   Read out in a panel where we had to really talk through small molecule (broad - LB) vs precision (narrow C4/STK) and broad (Tevard). ASO Update: Trials need heterogenous populations.  At first, I expect we will be looking for PTVs beyond the first 3 or 4 exons.  Once approved, or in subsequent trials, I assume it will be available more broadly but not at first.  Trials are coming, take notes and videos. Press Release on Roadmap: https://www.linkedin.com/posts/graglia_progress-in-syngap1-therapeutic-development-activity-7321668845495066624-1dDn Oliver's Warrior Story - https://curesyngap1.org/syngap-warriors/oliver/ Sign up for the conference: 222 Days! https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/ Impact Report Webinar can be watched in its entirety as well as in segments - 18 of them to cover most of the topics discussed are being added to our YT channel at https://www.youtube.com/playlist?list=PLjpr3a14_ls3OvtdFahBr4wAa8BL7aUkv Effie on TJB https://www.linkedin.com/posts/graglia_well-deserved-kudos-for-dr-terry-jo-bichell-activity-7321280877068541952-9f_1   CB Blood Drive this weekend in TN.  Read here for more information: https://curesyngap1.org/blog/fueling-research-syngap1-combinedbrain-biorepository-roadshow/ Newly Diagnosed Resources: https://cureSYNGAP1.org/Resources

In this episode of A Shot in the Arm podcast, Ben Plumley discusses an ongoing potentially highly significant legal challenge to the Affordable Care Act with Eric Waskowicz, Senior Policy Manager at the United States of Care. The case involves a small group of employers in Texas seeking to eliminate mandates for free preventative services, positing both constitutional issues and religious objections. Eric explains the potential widespread impacts on access to healthcare if the Supreme Court rules against the ACA provisions. He emphasizes the importance of no-cost preventative services and the economic and social benefits of maintaining them. The conversation also highlights continued bipartisan support - even from the Trump administration - for these measures and the role of state-level advocacy in preserving access to comprehensive healthcare. 00:00 Introduction to the Podcast 00:17 The Curious Case of Legal Action in the US 01:04 Introducing Eric Kovi and United States of Care 04:49 Background on the Affordable Care Act and Preventive Services 06:46 The Impact of the Supreme Court Case 15:39 Mobilizing Support and Advocacy 22:49 Eric Kovi's Career Journey 27:22 Call to Action and Conclusion 💬 Join the Conversation How do you see the future of global health unfolding? Share your thoughts in the comments! 🔔Subscribe & Stay Updated Listen on Spotify, Apple Podcasts, or your favorite podcast platform Watch on YouTube & subscribe for more in-depth global health discussions – www.youtube.com/@shotarmpodcast Youtube link https://youtu.be/32VDJese8nY

Turning Kids into Superheroes of Science with O’Ryan Health The world of pediatric autoimmune and rare diseases can feel isolating—especially when answers live behind hospital walls or research centers far from home. But what if science came to you? What if kids could lead the charge in reimagining care? In this episode, I’m joined by Dr. Tim Coleman, co-founder and COO of O’Ryan Health, a company flipping the script on pediatric research. Their breakthrough Artemis Platform is a child-friendly, at-home blood collection and logistics system that supports autoimmune, rare disease, and routine lab testing—making it possible for families to contribute to science and receive care without ever stepping into a hospital or lab. Tim and his team are building something extraordinary: a world where kids become superhero scientists, collecting blood samples at home with a virtually painless device, and helping unlock breakthroughs in real time. Inspired from the lived experience of co-founder Michael Parnell, whose daughter battles juvenile myositis, O’Ryan Health isn’t just a company—it’s a movement, empowering families to drive discovery and rewrite the future of pediatric healthcare. We talk about:  Why families should lead—not follow—in pediatric research  How at-home blood sampling could power new diagnostics, treatments, and even cures  The vision of a future where all pediatric blood work happens at home If you’ve ever dreamed of a healthcare system that sees, hears, and respects your child—this conversation is for you. Learn more and become a superhero family at oryan.health Follow along on Instagram: @oryan.health

Desde Buenos Aires, Argentina nos acompaña Sabrina Valdez. Ella nos cuenta la historia de Emma, quien fue diagnosticada con Syngap1 en el 2024. Aquí notamos la determinación imparable de una mamá por hacer todo lo posible en buscar las herramientas necesarias que ayuden a su hija.Bio de ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Merlina⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Información sobre SRF & SYNGAP1:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Syngap Research Fund⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Que es SYNGAP1?⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Recursos en Español⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Donaciones:⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠https://syngap.fund/Donate⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 & Epilepsia⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Porque es Importante Obtener un Diagnóstico Genético⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Cómo Obtener Pruebas Genéticas Gratuitas en EEUU⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Planificación Financiera Futura para las Personas con Discapacidades ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Comentarios: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠paulina@curesyngap1.org⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Conéctate con SRF (@curesyngap1):⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠TikTok⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP10 Video Podcast⁠⁠⁠ Semanal⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ con MikeEpisodio 27 Café SYNGAP1, Abril 17, 2025#CafeSYNGAP1 #Syngap #SYNGAP1 #CureSYNGAP1 #CafeSYNGAP1Emma #epilepsia #epilepsy #epilepsyawareness #autismo #autismawareness #discapacidadintelectual #id #enfermedadesraras #FondodeInvestigacionSYNGAP

Tuesday, April 15, 2025 – Week 16   CURRENT NEWS #Sprint4Syngap 2025 is in eleven days! Start or join a team and fundraise! https://curesyngap1.org/sprint25 look at these faces, $167,979 of which $145k+ fromTavillas!    Board Announcement: https://www.eurekalert.org/news-releases/1080490   LEARNING ABOUT SYNGAP1 ProMMiS NHS Webinar from Dr. McKee: https://youtu.be/zozwf1NDB5I we were waiting for this great paper: https://www.sciencedirect.com/science/article/abs/pii/S1098360025000668 which I discussed in #S10e167.   Also, learn from Dr. Knowles, Apple Pod: https://podcasts.apple.com/us/podcast/stanford-medcast/id1529672674 YT https://youtu.be/VBWa0FklYJs   Catatonia, watch these when you can: https://www.linkedin.com/posts/activity-7316937356194844672-PoUi/   Please ask me your ASO Questions - https://www.youtube.com/watch?v=1I0sRVZTY-A  For instance, these won't repair, but they will will upregulate... = make work harder. MORE NEWS In #S10e168 I talked about Drs Bowie & Willsey, this week I can applaud Postilla! https://www.linkedin.com/posts/inflames-research-flagship_making-sense-of-missense-in-a-rare-children-activity-7316376546833833986--Qoc/   SIBLINGS Tell your story, please for the other ones. https://curesyngap1.org/syngap-siblings/shanaye-worth/ https://curesyngap1.org/sibling-support/   PUBLICATION COUNT PubMed is at 17 YTD, 325 in total (trending to 52+, but I’m not as confident) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2025&timeline=expanded&sort=date&sort_order=asc   SHARE BLOOD TO THE SRF BIOBANK AT CB! Read here for more information: https://curesyngap1.org/blog/fueling-research-syngap1-combinedbrain-biorepository-roadshow/   VOLUNTEER  Join us: https://curesyngap1.org/volunteer-with-srf/   SOCIAL MATTERS - 4,009 LinkedIn.  https://www.linkedin.com/company/curesyngap1/- 1,334 YouTube.  https://www.youtube.com/@CureSYNGAP1  - 11,369 Twitter https://twitter.com/cureSYNGAP1 - 46k Insta https://www.instagram.com/curesyngap1/    NEWLY DIAGNOSED? New families have resources here! https://syngap.fund/Resources    Podcasts, give all of these a five star review! https://cureSYNGAP1.org/SRFApple  https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917   Episode 169 of #Syngap10  #Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS

Do you want to gain a deeper understanding of the impact of dementia on marriages? If you’re seeking practical guidance and emotional resilience in this area, discover solutions to help you navigate this challenging journey in this replay of an enlightening Books & Chit Chat discussion with Debra Tann, Ed.D. In this episode, you will be able to: Understand the ins and outs of dementia care to enhance your caregiving skills and provide better support.Gain insight into navigating the journey of dementia diagnosis to feel more empowered and informed.Explore the impact of dementia on marriages to build resilience and find ways to strengthen relationships.Implement effective care strategies for frontotemporal dementia, enhancing the quality of life for your loved one.Learn how to address racial disparities in dementia care to create a more inclusive and equitable support system. Our special guest is Debra Tann, Ed.D, the CEO of Reminiscent, who brings a vibrant blend of experience to the field of dementia education. Her journey into this space began with a career in education and a keen eye for behavioral changes in her husband, ultimately leading to a diagnosis of frontotemporal dementia (FTD). As a certified dementia educator and author of “The Race of Dementia,” Debra’s expertise offers caregivers practical guidance and emotional resilience, drawing from her own lived experiences. Her compassionate approach and dedication to enhancing caregiving skills make her a valuable resource for those navigating the complexities of dementia care. Books & Chit Chat is a partnership with Aging and Amazing to bring authors and readers together to share stories and discuss the multiple facets of dementia care. After the Podcast Purchase “The Race of Dementia” Read Debra’s AlzAuthors blog post Visit Debra’s website: Debra On Dementia Learn more about the Moderators Marianne Sciucco Christy Byrne Yates Learn more about Aging & Amazing Sign up for the book club About the Podcast AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys. We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here. Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here. Thanks for listening. We are a Whole Care Network Featured Podcast Proud to be on The Health Podcast Network Find us on The World Podcast Network and babyboomer.org Want to be on the podcast? Here’s what you need to know We’ve got merch! Shop our Store

🎙 In this RNegade podcast episode, we dive into the critical role of intuition in nursing, particularly during the COVID-19 pandemic. Jennifer Johnson, a nurse with 17 years of experience, shares her journey and emphasizes the importance of intuition in patient care. She discusses her upcoming book, Nursing Intuition: How to Trust our Gut, Save Your Sanity, and Survive Your Career, which combines intuition with scientific evidence, and highlights the need for recognizing intuition as a vital component of nursing education. The conversation also explores the challenges faced by new nurses, the significance of mentorship, and the potential for positive change within the healthcare system through community and collaboration. 👉 GET NURSING CES FOR THIS PODCAST HERE https://rnegade.thinkific.com/courses/greatest-power Introduction to Intuition in Nursing (00:00:03) Discussion on the importance of intuition and its suppression in childhood. Nurturing Intuition (00:01:28) Exploration of how intuition can be exercised and validated in nursing practice. Jen Johnson's Background (00:04:16) Jen shares her nursing journey and experiences across various healthcare settings. Impact of COVID-19 on Nursing (00:07:06) Jen reflects on how the pandemic influenced her perspective on nursing and intuition. Writing the Book on Intuition (00:08:41) Jen describes the process and motivation behind writing her book about intuition in nursing. Researching Intuition in Nursing (00:12:50) Discussion on the scientific backing of intuition and the abundance of research found. Intuition in Critical Care (00:14:37) Insights into how critical care environments influence the reliance on intuition among nurses. Importance of Intuition in Nursing (00:16:35) Highlighting the significance of trusting intuition in patient care. Courage to Discuss Intuition (00:19:09) Challenges faced in openly discussing intuition in nursing settings. Impact of COVID-19 on Conversations (00:19:11) COVID-19 allowed nurses to drop their guards and discuss intuition. Cultivating Intuition in Others (00:23:59) Engaging colleagues in discussions about their intuitive experiences. Reactions to Intuition Discussions (00:24:00) Exploring how nurses respond to discussions about relying on intuition. Trends in Intuition Use by Specialty (00:25:16) Investigating whether certain nursing specialties rely more on intuition. Education Gaps on Intuition (00:26:32) Discussion on the lack of formal education regarding intuitive skills in nursing. Nursing Communication Challenges (00:31:03) Discussion on the shift to automated systems and the importance of verbal communication in nursing. Nursing Intuition Development (00:33:12) Exploration of how intuition evolves with experience and the importance of vocalizing it. Cultivating Intuition through Journaling (00:34:03) Introduction to a book that teaches nurses to cultivate their intuition through journaling. Support for New Nurses (00:35:10) Reflection on the lack of support for new nurses and the importance of mentorship. Recognizing Small Wins (00:40:17) Emphasizing the significance of acknowledging small achievements in nursing. Burnout Prevention Strategies (00:41:29) Addressing the need for proactive measures to support nurses before they experience burnout. The Evolution of Nursing Attitudes (00:43:10) A conversation on the shift in nursing culture and the importance of intuition in practice. Generational Changes in Nursing (00:44:26) Discussion on the new generation of nurses and their understanding of self-worth and work environment. The Role of Intuition in Nursing (53:03) The importance of integrating intuition into nursing education to enhance care and reduce burnout. Learn more about Jennifer Johnson IG @ ernurse.Jenn TikTok @ ernurse.Jenn LinkedIn @ Jennifer Johnson BSCN, RN 🎧 RNEGADE FULL NURSING CE LIBRARY HERE https://rnegade.thinkific.com

Wednesday, April 9, 2025 – Week 15   Condolences to the Brimsek family and thank you John & Tobi for all your support.  We just shared an interview with our board member and John’s son-in-law, Eric Moulton https://cureSYNGAP1.org/Stories    Trip Report, two crazy days.  Many takeaways.  Trials may be coming soon.  If there is a trail, sign up.  Every time. khuba@jcu.edu    Do the Frazier Study and do the follow-ups!  https://curesyngap1.org/eye2 Global as well.  Australia, UK, Canada, please help.   We are busy too!  DiMe announcement just came out https://www.linkedin.com/posts/curesyngap1_new-project-announcement-children-with-activity-7315615778366537728-c-gU    Census is 1,581!  https://curesyngap1.org/blog/syngap1-census-2025-update-q1/   Impact report has a webinar! https://cureSYNGAP1.org/Impact    Both featured in Newsletter #44 - https://cureSYNGAP1.org/NL44   Monday 4/14 we have a webinar - Natural History & Clinical Trial Readiness - with Dr. McKee https://cureSYNGAP1.org/Jill    We have one space available in Colorado on May 20, 2025, email Lauren@curesyngap1.org to sign up.   Other blog about the CB Roadshow, please join us there https://curesyngap1.org/blog/fueling-research-syngap1-combinedbrain-biorepository-roadshow/   And the Polish Community speaking out about ASO trials: https://curesyngap1.org/blog/aso-choice-for-hope-syngap1-voices-from-poland/   #Sprint4Syngap 2025 is in one month! Start or join a team and fundraise! https://curesyngap1.org/sprint25 look at these faces, $66,383 https://www.youtube.com/watch?v=IW7owIsdjss   Bowie - Our funding goes far: https://www.eurekalert.org/news-releases/1078836 remember in July 2022 https://www.eurekalert.org/news-releases/960181    Also see this from CZI, featuring SYNGAP1 in Dr. Willsey’s work https://www.czbiohub.org/life-science/unlocking-biology-autism/   PubMed is at 17 YTD, 324 in total (trending to 52+, but I’m not as confident) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2025&timeline=expanded&sort=date&sort_order=asc   VOLUNTEER  Join us: https://curesyngap1.org/volunteer-with-srf/   SOCIAL MATTERS - 3,996 LinkedIn.  https://www.linkedin.com/company/curesyngap1/- 1,334 YouTube.  https://www.youtube.com/@CureSYNGAP1  - 11,391 Twitter https://twitter.com/cureSYNGAP1 - 46k Insta https://www.instagram.com/curesyngap1/    NEWLY DIAGNOSED? New families have resources here! https://syngap.fund/Resources    Podcasts, give all of these a five star review! https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917   Episode 168 of #Syngap10  #Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS

Show NotesEric Moulton talks with Rainy about his daughter Phoebe - going to a French-language school, her chance epilepsy diagnosis, getting involved in finding a cure, and raising over $60,000 for SYNGAP1 research. "Once you have that diagnosis, it really rocks your world, it changes your expectations - then what are you going to do about it?"All episodes are available at ⁠⁠cureSYNGAP1.org/Stories⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠.Connect with Eric and Emily:⁠Phoebe's Warrior StoryPhoebe's Fight - Sprint4Syngap Pageeric@cureSYNGAP1.org⁠ebrimsek@cureSYNGAP1.org⁠Eric's SRF bio⁠Emily's SRF bioConnect with ⁠⁠⁠⁠⁠⁠Rainy:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠rainy@cureSYNGAP1.org⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Rainy's SRF Bio⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠@Hope4theCure⁠⁠⁠⁠⁠YouTube - ⁠⁠⁠⁠⁠⁠@Hope4theCure⁠⁠⁠⁠⁠⁠Facebook - ⁠⁠⁠⁠⁠⁠Hope SelahMay⁠⁠⁠⁠⁠SYNGAP1 Stories ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Episode 028⁠⁠⁠⁠⁠Rainy and Hope's Cross Country QuestSRF & SYNGAP1 Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Syngap Research Fund⁠⁠ - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://cureSYNGAP1.org/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠What is SYNGAP1-related disorders?⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠How Many People Have SYNGAP1?⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 Resources for Newly Diagnosed Families⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Pre-register for the 2025 Cure SYNGAP1 Conference in Atlanta⁠⁠⁠⁠⁠⁠⁠⁠⁠Donate to SRF⁠⁠⁠⁠⁠SRF SYNGAP1 Brochure⁠⁠⁠⁠⁠Get Involved with SRF⁠⁠⁠⁠⁠⁠⁠⁠⁠Volunteer with SRF⁠⁠⁠⁠⁠⁠⁠SRF Fundraising Resource Page⁠⁠⁠⁠⁠⁠⁠⁠SRF's State Ambassador Program⁠⁠⁠⁠⁠⁠Advocate for SYNGAP1⁠⁠⁠⁠⁠⁠⁠⁠Wednesday Warriors⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Supporting SYNGAP1 Siblings⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 & Epilepsy⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Addressing the Symptoms of SYNGAP1⁠⁠⁠⁠⁠SYNGAP1 Studies and Trials:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 Studies⁠⁠⁠⁠⁠⁠⁠SYNGAP1 ProMMiS⁠⁠⁠ – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford⁠⁠⁠⁠Clinical Trials⁠⁠⁠⁠⁠⁠⁠⁠Frazier Eye Study⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Citizen Health⁠⁠⁠⁠More Links:⁠Why Getting a Genetic Diagnosis Matters⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠How to Get Free Genetic Testing⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Special Needs Trusts⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Sprint4Syngap 2025⁠⁠⁠⁠ (⁠⁠⁠donation page⁠⁠⁠ and ⁠⁠⁠resource guide⁠⁠⁠)⁠⁠⁠⁠⁠⁠⁠⁠⁠SRF Grants⁠⁠⁠⁠⁠⁠⁠⁠⁠SRF's Medical Considerations Document⁠⁠⁠Connect with SRF (@cureSYNGAP1):⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠TikTok⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠YouTube⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP10 Weekly Video Podcast⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠w/ MikeSynGAP Research Fund ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Apple Podcast Channel⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Family Zoom Meeting (bi-weekly on Wednesdays, 8PM ET): ⁠⁠cureSYNGAP1.org/SRFfam⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Meeting ID - 972 0059 2178 Passcode - 848417Comments: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ed@cureSYNGAP1.org⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Music: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠In the Forest... by Lesfm from Pixabay ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Episode 033 SYNGAP1 Stories, April 8, 2025#SYNGAP1StoriesPhoebe #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp33 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #SelfHelp #Volunteer #Conf25 #Therapy #Sprint4Syngap

🎙In this podcast episode, we explore menopause, focusing on misconceptions about hormone replacement therapy (HRT) and the importance of cycling hormones. The conversation covers the historical context of HRT, emphasizes the benefits of estradiol, discusses the popularity of the book "The Great Menopause Myth" and the need for individualized hormone therapy. EARN NURSING CES FOR THIS EPISODE HERE https://rnegade.thinkific.com/courses/biohack-yourself 👉Introduction to Menopause Myth (00:00:02) Discussion on the misconception that menopause is a myth. Discussion on the significance of cycling hormones and current misunderstandings surrounding them. 👉Overview of "The Great Menopause Myth" Book (00:01:53) Introduction to the book that discusses cycling hormones and its popularity among listeners. 👉Flawed Research on HRT (00:04:31) Critique of flawed research that influenced hormone replacement therapy practices and misconceptions. 👉The Impact of HRT Research on Women's Health (00:08:15) Exploration of how negative perceptions of hormone therapy have affected women's treatment options. 👉Menstrual Cycle as a Vital Sign (00:11:33) Discussion on the menstrual cycle's role as an indicator of overall health and vitality. 👉Understanding Hormonal Fluctuations (00:14:34) Explanation of how hormonal changes throughout the cycle affect women's health and libido. 👉The Role of Estrogen and Progesterone (00:15:58) Insights into how estrogen and progesterone interact during the menstrual cycle and their health benefits. 👉Brain Fog and Menopause (00:17:41) Discussion on the cognitive effects of menopause and the connection to hormonal changes. 👉Estrogen's Role in Overall Health (00:19:19) Emphasis on the importance of estrogen for various bodily functions beyond reproduction. 👉Challenges with Testosterone Treatment (00:21:05) Critique of the common use of testosterone for women's low sex drive without considering hormonal balance. 👉Estrogen vs. Testosterone for Women's Health (00:23:01) Discussion on the relative importance of estrogen over testosterone for addressing menopause symptoms. 👉Natural Hormonal Spikes (00:24:13) Discusses how natural hormonal spikes influence decision-making and assertiveness in women. 👉Testosterone in Decision Making (00:25:56) Highlights testosterone's role in making confident choices and rejecting unsuitable options. 👉Hormone Cycling Benefits (00:27:11) Emphasizes the importance of cycling hormones for optimal health and hormone receptor function. 👉Individualized Hormone Therapy (00:28:46) Discusses the variability in women's responses to hormone therapy and the need for personalized approaches. 👉Natural Hormonal Rhythms (00:30:11) Explores the connection between human biology and natural cycles, emphasizing harmony with nature. Examines how melatonin influences estrogen levels and fertility signals in women. 👉Static vs. Cycled Hormone Dosing (00:33:07) Contrasts static hormone dosing with cyclical approaches to enhance hormone effectiveness. 👉Individualized Hormone Dosing (00:36:23) Describes the necessity for individualized hormone dosing to optimize health and well-being. 👉Testing and Monitoring Hormone Levels (00:43:27) Discusses the need for a balance between testing hormone levels and addressing symptoms effectively. 👉Biohacking Hormones (00:47:03) Encouragement for women to experiment with hormone dosages to optimize well-being. 👉Fluctuations and Hormonal Changes (00:49:01) Exploration of how life circumstances can affect hormone levels and personal experiences. 👉Curiosity About Hormonal Interactions (00:56:12) Inquiry into the effects of certain peptides on hormone levels and personal experiences with them. 👉Understanding Hormonal Needs (00:57:07) Reflection on the complexities of hormonal needs and the importance of data in treatment. 🎧 EARN MORE NURSING CES IN OUR LIBRARY https://rnegade.thinkific.com

David Bredbenner, author of "Going Home: A Journey with Dementia," shares his profound experience caring for his mother through her journey with dementia. Before dementia, Betty Jane was a dynamo - a retired nurse turned successful artist who ran marathons well into her late 70s. The decline began subtly after a fall, but it was the passing of David's sister Terry that marked the stark transition into full-blown dementia  One of David's most powerful lessons was learning to "throw logic right out the window." Traditional reasoning and reality-checking only led to frustration. Instead, he discovered the transformative power of meeting his mother where she was, using humor and creative redirection rather than confrontation. Despite working in technology and traveling frequently, David and his sister made the conscious choice to keep their mother at home. While acknowledging it wasn't always possible for everyone, he describes it as both "pure hell" at times and "an absolute gift." The journey taught him profound patience and the importance of focusing on emotional connection rather than factual accuracy. Even in the most challenging moments - like when his mother became combative or refused care - David found that humor and gentle persistence could break through where logic failed. Perhaps most touching was David's reflection on love transcending understanding: "She knew she was loved...and she didn't have to know why." This simple but profound observation captures the essence of caring for someone with dementia - that connection and comfort matter more than comprehension. In this episode, you will: ·      Discover effective strategies for caring for a parent with dementia. ·      Understand the emotional journey of being a dementia caregiver and how to navigate it. ·      Explore the impact of Alzheimer's on family dynamics and relationships. ·      Uncover the process of writing a book about personal dementia experiences. ·      Learn practical and valuable strategies for managing dementia symptoms. After the Podcast Read David's AlzAuthors blog post Purchase “Going Home: A Journey with Dementia” Learn about the World Walks Against Dementia Learn about Norrms McNamara and Global Purple Angel  Learn more about the Moderators Marianne Sciucco Christy Byrne Yates Learn more about Aging & Amazing Sign up for the book club  About the Podcast AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys. We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here. Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here. Thanks for listening. We are a Whole Care Network Featured Podcast Proud to be on The Health Podcast Network Find us on The World Podcast Network and babyboomer.org Want to be on the podcast? Here’s what you need to know We’ve got merch! Shop our Store

In this episode of A Shot in the Arm Podcast, Ben Plumley talks with Professor Eyal Zimlichman, Chief Transformation Officer and Chief Innovation Officer for the Sheba Medical Center in Israel. They discuss the transformative role of artificial intelligence in global healthcare, from innovations that reduce mortality rates to AI-driven diagnostic tools. Prof. Zimlichman shares insights on leveraging AI for efficiency, reducing healthcare costs, and driving economic growth by fostering a culture of entrepreneurship and innovation. The conversation also delves into how developing countries can leapfrog traditional healthcare models using AI technology, and the importance of AI governance and validation across different populations.

Join Eric Goosby and Ben Plumley as they delve into the latest global health news coming out of Washington DC, including funding cuts from the US government to key international health programs, whether the administration will abide by the continuing resolution passed by Congress to fund all global health programs approved by Congress for 2025, and the implications for the UN, Gavi and US academic institutions. They also try to make sense of the significant job cuts announced by the administration to the Department of Health and Human Services today , and the continuing outbreak of measles in the US. These are hectic – if not entirely productive – times in the world of global health. But is a Trump administration strategy emerging from the chaos of executive orders, termination notices and the firing of so many key staff? 00:00 Introduction and Episode Overview 01:04 US Government Funding for International Development 01:49 Impact of Funding Cuts on Health and Human Services 02:12 The Growing Measles Crisis 02:36 Debate on Continuing Resolution and Budget Cuts 09:18 Termination of Funding to Gavi 13:25 Public Health Strategy and Administration Tactics 40:58 The Role of Individual Rights in Public Health 47:59 Conclusion and Final Thoughts 💬 Join the Conversation How do you see the future of global health unfolding? Share your thoughts in the comments! 🔔Subscribe & Stay Updated Listen on Spotify, Apple Podcasts, or your favorite podcast platform Watch on YouTube & subscribe for more in-depth global health discussions – www.youtube.com/@shotarmpodcast

In this heartfelt conversation, Heather Straughter shares her profound journey through grief after the loss of her son, Jake. She discusses the pivotal moments that shaped her path, the importance of community support, and the ongoing nature of grief. Heather reflects on the complexities of acknowledging loss, the unexpected triggers that can arise, and her evolving perspective on grief hierarchies. Through her experiences, she emphasizes the significance of finding one's own way to cope and the power of humor in navigating the dark moments of grief. In this conversation, Heather Straughter shares her personal journey through grief after the loss of her son, Jake. She discusses societal expectations surrounding grief, the dual nature of grief as both painful and transformative, and the importance of community support. Heather also talks about the creation of her podcast, 'A Place of Yes,' aimed at sharing stories of families dealing with similar challenges, and her mission to help families navigate the complexities of caring for children with special needs. The conversation emphasizes the need for compassion, understanding, and proactive support for grieving families. Follow: Jake's Help From Heaven A Place Of Yes Podcast on Instagram Chapters 00:00 Introduction and Personal Connection 01:41 The Impact of Grief on Life Choices 02:50 Navigating Grief and Community Support 08:21 The Ongoing Nature of Grief 10:33 The Complexity of Grief and Acknowledgment 12:26 Triggers and Unexpected Moments of Grief 15:59 The Hierarchy of Grief 18:23 Coping Mechanisms and Humor in Grief 22:09 The Dark Side of Grief 24:22 Unspoken Aspects of Grief 26:07 Finding Your Own Path in Grief 29:20 Navigating Grief: Societal Expectations and Personal Experiences 32:43 The Dual Nature of Grief: Pain and Growth 36:47 Creating a Supportive Community: The Birth of a Podcast 42:06 Expanding the Mission: Helping Families Beyond Local Boundaries 54:16 Words of Comfort: Supporting Grieving Families

Wednesday, March 26, 2025 – Week 13 #S10e166 was remarkable, #UnMetNeed https://www.youtube.com/watch?v=rut1q0LzdtA, with almost 600 views this is the best S10 episode, ever.  Don’t miss it, or the comments.  Feel free to add to them!   One of the things we did was make a CTR Survey, we have 130+ respondents, half US, half ROW - Poland and Australia.  Not too late to take part: https://forms.gle/tx5CUWXiQMDcJhHA8   Since CHCO PR in #S10e164, we have had two more: Dallman & Sohal PR36 for GI meds: https://curesyngap1.org/blog/julia-dallman-awarded-grant-for-syngap1-research/ PR37 for Cognition meds: https://curesyngap1.org/blog/dr-vikaas-sohal-ucsf-receives-syngap-research-fund-grant-for-syngap1-therapeutic-strategies/    #Sprint4Syngap 2025 is in one month! Start or join a team and fundraise! https://curesyngap1.org/sprint25 look at these faces https://www.youtube.com/watch?v=IW7owIsdjss   Getting to know our community: - Syngap Stories Podcast - KAH in Episode 32 https://cureSYNGAP1.org/Stories  - Cafe SYNGAP1 with Jaime https://curesyngap1.org/podcasts/cafe-syngap1/jaime/ - Sibling Story with Kallen https://cureSYNGAP1.org/Sibling  - DW of SRF AUS https://www.facebook.com/reel/1345989426605772 - Why Attend Cure SYNGAP1 Conference Video https://cureSYNGAP1.org/Pre25   - Tomorrow Webinar #100 Impact Report (3/27) https://cureSYNGAP1.org/IR24    PubMed is at 13 YTD, 321 in total (trending to 52+, but I’m not as confident) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2025&timeline=expanded&sort=date&sort_order=asc   Jillian McKee and CHOP team paper on SYNGAP1 now in Genetics in Medicine (https://www.sciencedirect.com/science/article/abs/pii/S1098360025000668) but you can get the Preprint: https://www.medrxiv.org/content/10.1101/2024.10.02.24314452v1.full.pdf   This paper was built on Citizen Health data, remember to sign up/refresh, early and often: Citizen Health -  https://www.citizen.health/partners/srf or http://curesyngap1.org/citizen   Bio-Repository and Roadshow Dates https://docs.google.com/presentation/d/1IjaHILXj7AlBDlbTJgvYrkBS_0bnI8VCnTIiPXJ7JGM/edit#slide=id.g32f5fa46d32_0_3   Thank you for the 15 glowing reviews of SRF on Great Nonprofits! https://www.cureSYNGAP1.org/GNP   VOLUNTEER  Join us: https://curesyngap1.org/volunteer-with-srf/   SOCIAL MATTERS - 3,971 LinkedIn.  https://www.linkedin.com/company/curesyngap1/- 1,311 YouTube.  https://www.youtube.com/@CureSYNGAP1  - 11,427 Twitter https://twitter.com/cureSYNGAP1 - 46k Insta https://www.instagram.com/curesyngap1/    NEWLY DIAGNOSED? New families have resources here! https://syngap.fund/Resources    Podcasts, give all of these a five star review! https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917   Episode 167 of #Syngap10  #Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS