Patient Education Podcasts

Friday, November 15, 2024   SRF NEWS Busy week for Mike & Virginie: Citizen Health & Ultragenyx, not Milken. Sign up for Citizen Health https://www.citizen.health/partners/srf Growing our name https://curesyngap1.org/blog/syngap-research-fund-srf-announces-dba-cure-syngap1-a-new-era-in-the-search-for-a-cure/ Financials updated with 2023 https://curesyngap1.org/finances/ Thank you Stefanie Decker! Newsletter #41 - https://Syngap.Fund/NL41 - About why we need a cure - quotes from our families We're over 100 volunteer bios on the website! More being added every week! Great work Zoe! https://curesyngap1.org/team/ Cafe SYNGAP1 e24 is up! Gloria Amparo Guzmán Cali, Colombia https://syngap.fund/Cafe   4MTx Announcement and direct impact on pipeline https://www.4mtx.net/news/4m-therapeutics-compounds-to-be-utilized-in-research-project-funded-by-national-institute-on-aging-bjebr https://curesyngap1.org/syngap1-related-disorder-therapeutic-pipeline/ Speaking of small molecules, get this on Ravicti https://www.medrxiv.org/content/10.1101/2024.11.06.24316676v2   RESEARCH UPDATE There are 306 papers on or related to SYNGAP1 since 1998, but 48 of those are in 2024! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2024&sort=pubdate&timeline=expanded Latest is from Frazier! https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.16112 Sign up for Frazier https://syngap.fund/eye2  https://curesyngap1.org/resources/studies/tracking-thinking-skills-and-behaviors-in-syngap1-patients/   More Grants at work Science: Key Missense Webinar next week https://curesyngap1.org/resources/webinars/virtual-and-experimental-approaches-to-the-pathogenicity-of-syngap1-missense-mutations/ New study at CHOP - Phenotype of the Hispanic SYNGAP1 Family. Details (English or Spanish) at https://Syngap.Fund/CHOPEsp Bower family blog - Camden's trip to CHCO - https://Syngap.Fund/CamCHCO Thank you Corey Baysden for getting the Studies so well organized!  https://curesyngap1.org/resources/studies/   Conference - Conference is 18 days away! Lineup: Science Day lineup - https://x.com/curesyngap1/status/1851723428677456093 Agendas are up! https://curesyngap1.org/events/conferences/syngap1-conference-2024/ Thursday Reception at the Hotel: https://www.eventbrite.com/e/rare-research-reception-tickets-1003668087267 Friday Join us for dinner! https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2024-caregiver-dinner   FUNDRAISING Coast2Coast Challenge $120,642 Syngap.Fund/C2C  Minted Cards - 20% discount, 15% to SRF, code FUNDRAISESYNGAP - https://Syngap.Fund/Minted FUNDRAISE https://syngap.fund/FR  CFC: #33321 https://curesyngap1.org/srf-cfc-syngap1-combined-federal-campaign/   VOLUNTEER SPOTLIGHT:Amber Mickler  https://www.linkedin.com/posts/amber-mickler-9b3534b8_syngap1-weneedacure-raredisease-activity-7263047283305320448-GpQK    ZOOM BACKGROUND https://drive.google.com/file/d/13jhPIBo-o1sHchEJz6KttocT1_h7GKZE/view?usp=sharing    VOLUNTEER  https://curesyngap1.org/volunteer-with-srf/   SOCIAL MATTERS  - 1,220 YouTube.  https://www.youtube.com/@CureSYNGAP1   - 3,847 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 11,815 Twitter https://twitter.com/cureSYNGAP1 - 47k Insta https://www.instagram.com/curesyngap1/ - 442 TikTok https://www.tiktok.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/id6464522917Episode 154 of #Syngap10  #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1

Sara Jimenez es mamá de Diego de 3 años. Ellos son la primera familia de Guatemala diagnosticada con SYNGAP1, y sin duda tienen una historia inspiradora que nos invita a no darnos por vencidos para encontrar un diagnóstico, dar lo mejor de nosotros como familias por el bienestar de nuestros hijos y sacar de la adversidad lo positivo y seguir adelante. Bio de ⁠⁠⁠⁠⁠⁠⁠⁠Merlina⁠⁠⁠⁠⁠⁠⁠⁠ Información sobre SRF & SYNGAP1: ⁠⁠⁠⁠⁠⁠⁠⁠Syngap Research Fund⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠Que es SYNGAP1?⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠Recursos en Español⁠⁠⁠⁠⁠⁠⁠⁠ Donaciones: ⁠⁠⁠⁠⁠⁠⁠⁠https://syngap.fund/Donate⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 & Epilepsia⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠Porque es Importante Obtener un Diagnóstico Genético⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠Cómo Obtener Pruebas Genéticas Gratuitas en EEUU⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠Planificación Financiera Futura para las Personas con Discapacidades ⁠⁠⁠⁠⁠⁠⁠⁠ Comentarios: ⁠⁠⁠⁠⁠⁠⁠⁠⁠[email protected]⁠⁠⁠⁠⁠⁠⁠⁠⁠ Conéctate con SRF (@curesyngap1): ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠TikTok⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP10 Video Podcast⁠⁠⁠ Semanal⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ con Mike Episodio 22 Café SYNGAP1, Noviembre 14, 2024 #CafeSYNGAP1 #Syngap #SYNGAP1 #CureSYNGAP1 #CafeSYNGAP1Diego #epilepsia #epilepsy #epilepsyawareness #autismo #autismawareness #discapacidadintelectual #id #enfermedadesraras #FondodeInvestigacionSYNGAP #SynGAPResearchFund #abogacia #defensadelpaciente #advocacy #patientadvocacy #neurologia #pruebasgeneticas #terapias #familia #apoyo

Episode Highlights: Mindy Henderson, a powerful advocate for disability rights and the Director & Editor-In-Chief of MDA's Quest Media. Mindy shares her journey of breaking barriers in the skies, working tirelessly to make air travel more accessible for wheelchair users and the broader disability community. She delves into practical tips for navigating travel with a wheelchair-using child, explains the importance of universal design, and discusses how sharing your story can be a catalyst for change. Mindy also talks about her book, The Truth About Things That Suck, and the role of mindset in overcoming adversity. Packed with inspiration and actionable advice, this episode is a must-listen for anyone looking to make the world more accessible, one step—or one flight—at a time. Links: Connect with Mindy Henderson on LinkedIn: LinkedIn Profile Learn more about MDA Quest: mdaquest.org Mindy's book - The Truth About Things That Suck: Amazon Link Tammy Duckworth - Every Day is a Gift: Amazon Link Get Involved and Take Action: Share your story on social media to raise awareness. Join disability advocacy groups to support accessible travel policies. Tune in and join us in supporting accessible, inclusive travel! Airplane Travel Tips from a One Million Mile Traveler The recent passage of the FAA Reauthorization Act

In this replay of an Aging & Amazing Book Club discussion, we engage in a deep and emotional conversation with Carolyn Birrell, discussing her personal experience as a caregiver for her mother, who had dementia. Carolyn, author of Walking with Fay: My Mother’s Uncharted Path into Dementia, shares her story of coping with the challenges of caregiving, its emotional toll, and the need to find humor and love in the face of difficult and unlovable behavior from her mother. She also shares the emotional story of the last days of her mother’s life during the height of the COVID-19 lockdown. Throughout, Carolyn emphasizes the need for caregivers to find encouragement in being more loving during this difficult process, even when faced with resentment and disappointment. One of the most notable insights shared is Carolyn's reflection on learning to see past the unlovable behavior of her mother and to remember the person she fell in love with. Quotes Balancing Care and Judgment: "One of the most frightening things for me during that time was the perception from others that I was being overreactive and controlling and was inserting myself into my mother's life unnecessarily." Caring for a Loved One with Dementia: "I was able to manage her quality of care, but I wasn't able to manage her quality of life." Finding Encouragement in Challenging Times: "When I wrote the book, I thought I was writing it for people who were feeling alone and I wanted them to know that no, you're not alone, that others have gone through this just like you. You're going to be okay and hang in there." Finding Humor and Love in Caregiving: "And I think what I really learned from this whole thing is trying to find the humor and the spirit of actual loving this person who has become oftentimes unlovable." In this episode, you will: ·     Uncover insightful tips for navigating the unique challenges of dementia caregiving ·     Understand the profound impact of COVID-19 on dementia care ·     Discover effective coping strategies for dementia caregivers during challenging times. ·     Learn about the valuable support and resources available through the Alzheimer's Association support groups After the podcast Read Carolyn’s AlzAuthors post Purchase Walking With Fay now Note: We are an Amazon Associate and may receive a small commission from book sales. Connect with Carolyn Facebook Instagram LinkedIn Website 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 Solving Healthcare, we explore the staggering costs of Ozempic, which can exceed $10,000 annually, and discuss the importance of adopting healthier, cost-effective alternatives. Dr. K highlights the role of unprocessed foods, regular exercise, and sustainable lifestyle changes that can help avoid reliance on expensive medications. We delve into the consequences of neglecting health, from ICU stays to the toll on families, underscoring the ripple effects of our choices on loved ones and the healthcare system.Listen now on Apple & SpotifySPONSORBetterHelp is the largest online counseling platform worldwide. They change the way people get help with facing life's challenges by providing convenient, discreet and affordable access to a licensed therapist. BetterHelp makes professional counselling available anytime, anywhere, through a computer, tablet or smartphone.Sign up HERE for 10% off | Use discount code “solvinghealthcare”OFFERSGYATA NUTRITIONGyata Nutrition is now live! Founded by Dr. Kwadwo Kyeremanteng, Gyata Nutrition offers top-quality supplements, including New Zealand Whey Protein Isolate, Collagen, Magnesium, and Fish Oil—all Health Canada-approved.Get your Gyata Strong Bundle and save 50%Visit gyatanutrition.com and use promo code kwadcast15 to save on your order now!LMNTWe're excited to announce our partnership with LMNT, a pioneer in superior hydration solutions. The key to proper hydration isn't just water—it's water plus electrolytes. This balance is vital to avoid issues like muscle cramps and energy dips, often caused by the dilution of electrolyte levels from excessive water intake, a condition known as hyponatremia.Enter LMNT, an electrolyte drink mix that's tasty, convenient, and free from sugar or artificial additives. Co-created by Robb Wolf and Luis Villasenor, LMNT provides optimal ratios of sodium, potassium, and magnesium, ensuring not only health and performance benefits but also a delightful taste experience with flavours like Orange Salt, Citrus Salt, and the new Watermelon Salt.To celebrate our partnership, we're offering you a free sample pack.Simply visit DrinkLMNT.com/kwadcast and start your journey to better hydration. LMNT stands behind their product with a no-questions-asked refund policy.Together with LMNT, we're redefining hydration. Remember, it's not just about water—it's about water PLUS electrolytes. Stay hydrated, and stay healthy!LMNTEXAMINE.COMBest source for evidence based nutrition and supplement information.Exclusive Offer for Kwadcast FollowersWe are thrilled to roll out a special offer exclusively for the subscribers of Kwadcast.substack.com, made possible by our new partnership:* 7-Day Free Trial: Start your journey with Examine.com with no strings attached. Explore their exhaustive resources and see how they can aid in meeting your health and wellness objectives.* Discounted Subscription Plans: Enjoy a special discount on Examine.com’s membership, tailored just for you:* Monthly Subscription: Originally $29, now just $25 — a saving of 14%.* Yearly Subscription: Typically $198, now only $171 — saving you 14% as well.Get Your Discounted AccessReady to dive in? Simply use this special link to access these exclusive discounts. The link will direct you to a sign-up page where your discounts will be automatically applied at checkout.Discount LINK for Examine.comSolving Healthcare Media with Dr. Kwadwo Kyeremanteng is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.Thanks for reading Solving Healthcare Media with Dr. Kwadwo Kyeremanteng! This post is public so feel free to share it. This is a public episode. If you’d like to discuss this with other subscribers or get access to bonus episodes, visit kwadcast.substack.com/subscribe

We dive into the important topic of healthspan vs. lifespan and share some laughter along the way. We talk about how one simple thing—strength training—can drastically improve the quality of our years on this planet. Remember our aging episode with Dr. Snyder? We chat about healthspan, the key to living longer and healthier, and introduce the term sarcopenia, the gradual loss of muscle mass. Highlighting a super cool study from the British Medical Journal, we discover that heavy resistance training can keep us strong even into our later years! We share practical tips and anecdotes to help you get started with strength training, no matter your age. Whether you're an Olympic lifter or just getting off the couch, there's something here for everyone. Join us, have a laugh, and let's start lifting those weights together! Please sign up for our SUBSTACK For more episodes, limited edition merch, to send us direct messages, and more, follow this link!  Connect with us: Website: https://yourdoctorfriendspodcast.com/ Email us at [email protected] @your_doctor_friends on  Instagram - Send/DM us a voice memo or question and we might play it/answer it on the show or on socials! @yourdoctorfriendspodcast1013 on YouTube 00:00 Introduction and Setting the Scene 00:48 Understanding Healthspan vs Lifespan 02:03 The Power of Strength Training 02:52 Sarcopenia: The Silent Muscle Loss 05:25 Study on Resistance Training in Older Adults 10:14 Practical Advice for Strength Training 13:39 Conclusion and Final Thoughts

Gloria Amparo Guzmán es madre de Gloria Isabel, quien tiene 39 años y diagnosticada con Syngap1. Originarias de Cali, Colombia, Gloria nos habla sobre los desafíos y retos que ha enfrentado a lo largo de los años. También nos muestra su valentía y firmeza en la búsqueda del bienestar de su hija, siempre con la sonrisa que la caracteriza, enfrentando así las dificultades. Bio de ⁠⁠⁠⁠⁠⁠⁠Merlina⁠⁠⁠⁠⁠⁠⁠ Información sobre SRF & SYNGAP1: ⁠⁠⁠⁠⁠⁠⁠Syngap Research Fund⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠Que es SYNGAP1?⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠Recursos en Español⁠⁠⁠⁠⁠⁠⁠ Donaciones: ⁠⁠⁠⁠⁠⁠⁠https://syngap.fund/Donate⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠SYNGAP1 & Epilepsia⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠Porque es Importante Obtener un Diagnóstico Genético⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠Cómo Obtener Pruebas Genéticas Gratuitas en EEUU⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠Planificación Financiera Futura para las Personas con Discapacidades ⁠⁠⁠⁠⁠⁠⁠ Comentarios: ⁠⁠⁠⁠⁠⁠⁠⁠[email protected]⁠⁠⁠⁠⁠⁠⁠⁠ Conéctate con SRF (@curesyngap1): ⁠⁠⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠TikTok⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP10 Video Podcast⁠⁠⁠ Semanal⁠⁠⁠⁠⁠⁠⁠⁠⁠ con Mike Episodio 21 Café SYNGAP1, Noviembre 7, 2024 #CafeSYNGAP1 #Syngap #SYNGAP1 #CafeSYNGAP1Gloria #epilepsia #epilepsy #epilepsyawareness #autismo #autismawareness #discapacidadintelectual #id #enfermedadesraras #FondodeInvestigacionSYNGAP #SynGAPResearchFund #abogacia #defensadelpaciente #advocacy #patientadvocacy #neurologia #pruebasgeneticas #terapias #familia #apoyo

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🎙 In this episode of the Renegade Podcast, Ed Harold delves into his transformative journey through yoga and breathwork, discussing their profound impact on his life, athletic training, and overall well-being. He emphasizes the importance of maintaining autonomic balance throughout the day to enhance performance and improve sleep quality. Ed shares practical breathing exercises for athletes, weight loss, and emotional regulation, highlighting how conscious breath control can reprogram stress responses and foster personal growth. The conversation underscores the interconnectedness of body and mind, promoting discernment, self-care, and lifelong learning for holistic health and vitality. 👉 GET NURSING CES FOR THIS PODCLASS https://rnegade.thinkific.com/courses/take-a-breath 👉GET IT FREE WITH 1 CE FOR 1 WEEK ONLY. EXPIRES 11/12 AND MOVES INTO PAID CONTENT 👉 Check out our Membership options while you visit our site. Join The RNegades! https://rnegade.thinkific.com/pages/membership

Caregiving isn’t just about caring for older parents. In this conversation, Juston White talks about the steps he took to advocate for his sister’s care when she developed rapidly progressive multiple sclerosis – including becoming her legal guardian. He reflects on the challenges of guardianship and the importance of giving his sister a voice in her care decisions. Key Takeaway: advocacy often includes addressing more than medical needs ·     Establish a relationship with the hospital or health systems case managers and social workers. ·     Expand your own definition of advocacy. Legal and financial advocacy can unlock additional benefits. ·     Be open to guardianship. While it is a last resort, guardianship may be the best option when advocating for someone with a serious or catastrophic illness. Share your story with Archelle Newsletter: https://www.archellemd.com/newsletter Email: [email protected] Instagram:  https://instagram.com/speakupforyourhealth Facebook: https://www.facebook.com/speakupforyourhealth

In this episode of Solving Healthcare, we're joined by Alan, founder of Light-it, to discuss his company’s journey from a software development agency to a healthcare innovation leader. Alan explains how the COVID-19 pandemic accelerated technology adoption in healthcare, highlighting the transformative potential of AI and generative AI for patient care. He emphasizes the role of Light-it’s innovation department and describes the company’s unique ecosystem of collaborating companies. Looking ahead, Alan envisions growth in team size, impact, and the creation of new companies to address gaps in the healthcare industry.Listen now on Apple & SpotifySPONSORBetterHelp is the largest online counseling platform worldwide. They change the way people get help with facing life's challenges by providing convenient, discreet and affordable access to a licensed therapist. BetterHelp makes professional counselling available anytime, anywhere, through a computer, tablet or smartphone.Sign up HERE for 10% off | Use discount code “solvinghealthcare”OFFERSGYATA NUTRITIONGyata Nutrition is now live! Founded by Dr. Kwadwo Kyeremanteng, Gyata Nutrition offers top-quality supplements, including New Zealand Whey Protein Isolate, Collagen, Magnesium, and Fish Oil—all Health Canada-approved.Get your Gyata Strong Bundle and save 50%Visit gyatanutrition.com and use promo code kwadcast15 to save on your order now!LMNTWe're excited to announce our partnership with LMNT, a pioneer in superior hydration solutions. The key to proper hydration isn't just water—it's water plus electrolytes. This balance is vital to avoid issues like muscle cramps and energy dips, often caused by the dilution of electrolyte levels from excessive water intake, a condition known as hyponatremia.Enter LMNT, an electrolyte drink mix that's tasty, convenient, and free from sugar or artificial additives. Co-created by Robb Wolf and Luis Villasenor, LMNT provides optimal ratios of sodium, potassium, and magnesium, ensuring not only health and performance benefits but also a delightful taste experience with flavours like Orange Salt, Citrus Salt, and the new Watermelon Salt.To celebrate our partnership, we're offering you a free sample pack.Simply visit DrinkLMNT.com/kwadcast and start your journey to better hydration. LMNT stands behind their product with a no-questions-asked refund policy.Together with LMNT, we're redefining hydration. Remember, it's not just about water—it's about water PLUS electrolytes. Stay hydrated, and stay healthy!LMNTEXAMINE.COMBest source for evidence based nutrition and supplement information.Exclusive Offer for Kwadcast FollowersWe are thrilled to roll out a special offer exclusively for the subscribers of Kwadcast.substack.com, made possible by our new partnership:* 7-Day Free Trial: Start your journey with Examine.com with no strings attached. Explore their exhaustive resources and see how they can aid in meeting your health and wellness objectives.* Discounted Subscription Plans: Enjoy a special discount on Examine.com’s membership, tailored just for you:* Monthly Subscription: Originally $29, now just $25 — a saving of 14%.* Yearly Subscription: Typically $198, now only $171 — saving you 14% as well.Get Your Discounted AccessReady to dive in? Simply use this special link to access these exclusive discounts. The link will direct you to a sign-up page where your discounts will be automatically applied at checkout.Discount LINK for Examine.comSolving Healthcare Media with Dr. Kwadwo Kyeremanteng is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.Thanks for reading Solving Healthcare Media with Dr. Kwadwo Kyeremanteng! This post is public so feel free to share it. This is a public episode. If you’d like to discuss this with other subscribers or get access to bonus episodes, visit kwadcast.substack.com/subscribe

In this episode of 'Your Doctor Friends,' we discuss Dr. Jessi Gold's impactful memoir, "How Do You Feel? One Doctor's Search for Humanity in Medicine." Dr. Gold shares stories from her experiences as a psychiatrist, focusing on the mental health struggles of healthcare providers during the COVID-19 pandemic. We delve into the book's emotional depth, exploring themes of vulnerability, guilt, and the difficulty healthcare providers face in acknowledging their own need for help. Dr. Gold's insights stress the importance of external support and the need to change the culture within the healthcare system to prioritize mental health and well-being. Please sign up for our SUBSTACK For more episodes, limited edition merch, to send us direct messages, and more, follow this link!  Connect with us: Website: https://yourdoctorfriendspodcast.com/ Email us at [email protected] @your_doctor_friends on  Instagram - Send/DM us a voice memo or question and we might play it/answer it on the show or on socials! @yourdoctorfriendspodcast1013 on YouTube 00:00 Introduction: Who Helps the Helpers? 00:10 Reviewing Dr. Jessi Gold's Book 00:20 The Emotional Impact of the Book 00:50 Meet Dr. Jessi Gold 01:03 Patient Stories and Personal Insights 01:49 Discussing Mental Health in Healthcare 02:47 Challenges Faced by Healthcare Providers 04:01 Highlighting Megan's Story 05:06 The Struggles of Healthcare Providers 07:41 The Burden of Asking for Help 09:23 Personal Reflections and Therapy 17:18 The Importance of Support Systems 25:48 Changing the Culture in Medicine 29:33 Final Thoughts and Conclusion

2024-10-31 Clinical Research Data Sharing Alliance (CRDSA) published two new standards earlier this year: the Standard for Sharing Clinical Study Data and the Standard for Secondary Analysis of Clinical Study Data.We held a great discussion on how these standards aim to facilitate the responsible sharing and use of anonymized individual patient data from clinical studies to support the research community and accelerate the discovery and delivery of new therapies to patients. Data Reuse in Regulatory Submissions: The Role of Data Platforms resource was discussed during the live session as well.You can join TGIF-DTRA Sessions live on LinkedIn Live Audio on Friday's at 12:00 PM ET by checking out our LinkedIn. Follow the Decentralized Trials & Research Alliance (DTRA) on LinkedIn and X. Learn more about Membership options and our work at www.dtra.org.

STUDIES AND A TRIAL FRAZIER https://curesyngap1.org/resources/studies/tracking-thinking-skills-and-behaviors-in-syngap1-patients/ CHANGES (UK) https://curesyngap1.org/resources/studies/changes-study-adults-an-investigation-into-behaviour-and-physiology-in-syngap1/ PNO https://curesyngap1.org/resources/studies/pregnenolone-treatment-trial-for-individuals-with-autism/   Science: Chow Press - https://curesyngap1.org/blog/dr-clement-chow-at-the-university-of-utah-receives-support-from-syngap-research-fund-srf-to-accelerate-therapeutic-development-for-syngap1-related-disorders-pr30/ Sohal Webinar - https://curesyngap1.org/resources/webinars/94-targeting-gamma-oscillations-to-improve-cognition/ or https://fb.watch/vBYXj4FY7A/    Conference - Conference is 1 month away! Lineup: Science Day lineup - https://x.com/curesyngap1/status/1851723428677456093 Agendas are up! https://curesyngap1.org/events/conferences/syngap1-conference-2024/ Thursday Reception at the Hotel: https://www.eventbrite.com/e/rare-research-reception-tickets-1003668087267 Friday Join us for dinner! https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2024-caregiver-dinner   RESEARCH UPDATE There are 304 papers on or related to SYNGAP1 since 1998, but 46 of those are in 2024! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2024&sort=pubdate&timeline=expanded Latest is from Canada, where they look at the impact of SYNGAP1 on auditory cortex function, social behavior and ability to extinguish fear memories. https://www.jneurosci.org/content/early/2024/10/08/JNEUROSCI.0946-24.2024.long   FUNDRAISING     - Coast2Coast Challenge $92,754 Syngap.Fund/C2C     - Missense Account of the Fund $25,940 https://secure.givelively.org/donate/syngap-research-fund-incorporated/missense-fund    - Charmander $10,585 https://secure.givelively.org/donate/syngap-research-fund-incorporated/running-for-charmander   - Emmy $8,347 https://secure.givelively.org/donate/syngap-research-fund-incorporated/save-emmy-s-future-fund-syngap1-research    Minted Cards - 20% discount, 15% to SRF, code FUNDRAISESYNGAP - https://Syngap.Fund/Minted   Lovely blog on Scramble: https://curesyngap1.org/blog/swinging-for-a-cause-the-3rd-annual-scramble-for-syngap1/   ZOOM BACKGROUND https://drive.google.com/file/d/13jhPIBo-o1sHchEJz6KttocT1_h7GKZE/view?usp=sharing    VOLUNTEER  https://curesyngap1.org/volunteer-with-srf/   FUNDRAISE https://syngap.fund/FR  CFC: #33321 https://curesyngap1.org/srf-cfc-syngap1-combined-federal-campaign/   SOCIAL MATTERS  - 1,200 YouTube.  https://www.youtube.com/@CureSYNGAP1   - 3,818 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 11,889 Twitter https://twitter.com/cureSYNGAP1 - 47k Insta https://www.instagram.com/curesyngap1/ - 442 TikTok https://www.tiktok.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/id6464522917Episode 153 of #Syngap10  #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1

Rune Labs leverages real-world data and digital biomarkers to revolutionize the treatment of neurodegenerative diseases like Parkinson's, enabling personalized and data-driven care.

Unexpectedly, a physician's journey of caring for her father with Alzheimer's disease leads to groundbreaking insights. From reversing cognitive decline to the impact of emotional trauma, Dr. Helena Popovic shares a wealth of evidence-based strategies for caregivers. Her unique blend of personal experience and scientific knowledge sheds light on effective coping strategies and self-care techniques for those caring for individuals with Alzheimer's. Get ready to dive into a treasure trove of information, humor, and wisdom, as Dr. Popovic reveals the power of joy, gratitude, and holistic well-being in the face of Alzheimer's disease. Quotes "The human brain is continually altering its function, cell number, circuitry, and chemistry as a direct result of everything we do, experience, think and believe. This is called neuroplasticity." - Helena Popovic "The most important thing I could give him would be genuine joy, love, enthusiasm. So just looking after ourselves is just in itself already looking after the other person." - Helena Popovic "The greatest gift that we can give to the people we care about are our life force, our energy, our enthusiasm, our passion." - Helena Popovic In this episode, you will: Discover effective coping strategies to ease the challenges of caring for someone with Alzheimer's.Learn about potential methods to slow down or reverse cognitive decline in Alzheimer's patients.Explore the impact of emotional trauma on the risk of developing Alzheimer's and how to mitigate its effects.Uncover self-care techniques to maintain your well-being while caring for a loved one with Alzheimer's.Understand the benefits of practicing gratitude for your mental health and overall resilience. Purchase "In Search of My Father" Connect with Dr. Helena Popovic Facebook Instagram YouTube LinkedIn  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 Solving Healthcare, Dr. K explores essential strategies for better sleep. He covers how meal timing and food choices impact rest, the importance of reducing evening blue light exposure, and the role of sleep-supporting supplements like magnesium. He highlights the benefits of consistent sleep routines and shares tips for creating a sleep-friendly environment, empowering listeners to optimize their sleep for improved energy, mood, and overall well-being.Listen now on Apple & SpotifySPONSORBetterHelp is the largest online counseling platform worldwide. They change the way people get help with facing life's challenges by providing convenient, discreet and affordable access to a licensed therapist. BetterHelp makes professional counselling available anytime, anywhere, through a computer, tablet or smartphone.Sign up HERE for 10% off | Use discount code “solvinghealthcare”OFFERSGYATA NUTRITIONGyata Nutrition is now live! Founded by Dr. Kwadwo Kyeremanteng, Gyata Nutrition offers top-quality supplements, including New Zealand Whey Protein Isolate, Collagen, Magnesium, and Fish Oil—all Health Canada-approved.Get your Gyata Strong Bundle and save 50%Visit gyatanutrition.com and use promo code kwadcast15 to save on your order now!LMNTWe're excited to announce our partnership with LMNT, a pioneer in superior hydration solutions. The key to proper hydration isn't just water—it's water plus electrolytes. This balance is vital to avoid issues like muscle cramps and energy dips, often caused by the dilution of electrolyte levels from excessive water intake, a condition known as hyponatremia.Enter LMNT, an electrolyte drink mix that's tasty, convenient, and free from sugar or artificial additives. Co-created by Robb Wolf and Luis Villasenor, LMNT provides optimal ratios of sodium, potassium, and magnesium, ensuring not only health and performance benefits but also a delightful taste experience with flavours like Orange Salt, Citrus Salt, and the new Watermelon Salt.To celebrate our partnership, we're offering you a free sample pack.Simply visit DrinkLMNT.com/kwadcast and start your journey to better hydration. LMNT stands behind their product with a no-questions-asked refund policy.Together with LMNT, we're redefining hydration. Remember, it's not just about water—it's about water PLUS electrolytes. Stay hydrated, and stay healthy!LMNTEXAMINE.COMBest source for evidence based nutrition and supplement information.Exclusive Offer for Kwadcast FollowersWe are thrilled to roll out a special offer exclusively for the subscribers of Kwadcast.substack.com, made possible by our new partnership:* 7-Day Free Trial: Start your journey with Examine.com with no strings attached. Explore their exhaustive resources and see how they can aid in meeting your health and wellness objectives.* Discounted Subscription Plans: Enjoy a special discount on Examine.com’s membership, tailored just for you:* Monthly Subscription: Originally $29, now just $25 — a saving of 14%.* Yearly Subscription: Typically $198, now only $171 — saving you 14% as well.Get Your Discounted AccessReady to dive in? Simply use this special link to access these exclusive discounts. The link will direct you to a sign-up page where your discounts will be automatically applied at checkout.Discount LINK for Examine.comSolving Healthcare Media with Dr. Kwadwo Kyeremanteng is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.Thanks for reading Solving Healthcare Media with Dr. Kwadwo Kyeremanteng! This post is public so feel free to share it. This is a public episode. If you’d like to discuss this with other subscribers or get access to bonus episodes, visit kwadcast.substack.com/subscribe

Welcome back, friends! In this exciting and insightful episode, we dive deep into the fascinating world of physical therapy with the help of renowned expert Mike Reinold. We tackle the challenges of finding a quality physical therapist, evaluating the benefits of various types of therapy practices from large corporate chains to small community-focused clinics, and understanding the importance of one-on-one, personalized care. We explore misconceptions about cost, the significance of hands-on treatments, and the crucial role of repetition and communication in achieving superior health outcomes. We also dig into the necessity of educating patients, setting goals, and continuously assessing progress for sustainable, long-term improvement. Whether you're looking for quality care, contemplating cash-based models, or seeking advice on how to choose the right therapist for your specific needs, this episode has got you covered. Join us as we empower you with the knowledge to navigate your physical therapy journey and reap the benefits of truly tailored treatment. Thanks for tuning in! Please sign up for our SUBSTACK For more episodes, limited edition merch, to send us direct messages, and more, follow this link!  Connect with us: Website: https://yourdoctorfriendspodcast.com/ Email us at [email protected] @your_doctor_friends on  Instagram - Send/DM us a voice memo or question and we might play it/answer it on the show or on socials! @yourdoctorfriendspodcast1013 on YouTube @JeremyAllandMD on Instagram, Facebook, and Twitter/X @JuliaBrueneMD on Instagram EPISODE: 00:00 Introduction: The Importance of Finding Good Physical Therapy 00:00 Personal Anecdote: The Struggle to Find Quality Care 00:36 The Challenge of Identifying Good Physical Therapy 01:35 Podcast Episode Announcement 02:07 Introducing Mike Reinald: Expert in Physical Therapy 02:16 Mike Reinald's Background and Experience 03:10 What Constitutes Good Physical Therapy? 05:29 The Role of Word of Mouth in Finding Quality PT 06:34 In-Clinic Experience: What to Expect 07:04 The Importance of Hands-On Time 07:34 Balancing PT and PTA Roles 09:03 Clinic Environment and Equipment 10:04 Challenges in High-Volume Clinics 11:43 Business Models: Corporate vs. Small Practices 14:15 The Benefits of Concierge-Based PT 16:11 Scheduling Flexibility and Individualized Care 17:11 Hands-On vs. Passive Treatments 18:46 Short-Term Relief and Initial Treatment 19:13 Progressing Exercises for Long-Term Improvement 19:35 Importance of Compliance and Accountability 20:15 Finding and Addressing the Root Cause 20:48 Repetition and Habit Building 21:55 Effective Communication and Patient Education 23:04 Evaluating Physical Therapy Effectiveness 24:12 The Role of Physical Therapists and Physicians 28:31 Choosing the Right Physical Therapist 31:22 Final Thoughts and Key Takeaways

Anterior is transforming healthcare with AI that understands clinical jargon, delivering value by automating administrative tasks like prior authorization that cost over $1 trillion annually.

Tuesday, October 22, 2024 First Principles Genetic disease means that gene broken since conception. Novel medicines are possible ways to fix the gene - Genetic Therapies (ASO &/or AAV), this is recent, before now, kids with these diseases were a “go home and love them” situation. These are delivered via spinal tap or directly to the brain in leading medical centers. First though, regulators must approve.   Our job Develop medicines or get industry to - This is happening see Pipeline Get regulators to approve trials Get medical centers up to speed on SYNGAP1-Related Disorders (SRD) What we are building on CHOP ENDD funded externally (see #S10e92) and replicating what was built for STXBP1, check last week’s webinar https://curesyngap1.org/resources/webinars/93-endd-chop-2024-syngap1/ Rare-X platform for PRO collection Regulatory pathway being made clearer every day by Stoke (Dravet), Praxis (SCN2A), Ionis (many) all of whom are working on SYNGAP1 as well.   What we are asking for We need to raise at least $500k (3rd site), preferably $1.13M (ProMMiS) Make your largest gift ever to SRF Fundraise with friends and family ACES is now ProMMiS, who knew ACE meant Adverse Childhood Event, not us. Key slides: S1 Path to Treatment | 2024 (09.27.24) 1. Why Now?  Why is it time to go from bench to bedside (research to clinical)? At least 10 companies on our pipeline not to mention multiple small molecule efforts We have limited resources – so the focus has to transition, clinical funding first. CHOP Gift is 1 year down… 2. Why NHS?Understand SYNGAP1 better, go beyond Vlaskamp 2019 and Wiltrout 2024, see #S10e105  FYI at CHOP, as I shared in #S10e151, at year 1, we are at  – 86 (Visits) + 10 (new scheduled) + 19 (2nd) + 4 (3rd)  + 22 (follow up)  Learn what to measure in clinical trials for SRD, remember our seizures are challenging Ideally we develop a Synthetic Control Arm if we use GCP Why top shelf?  We need institutions the FDA will take seriously and our children are very complex requiring experienced clinicians.  3. Why Multidisciplinary. Neuro, Psych, Genetics, PT, ST, OT, GI, Sleep, ENT, Ortho. Beyond the sheer burden of getting our kids out and about for multiple appointments the coordination by a parent is almost impossible.   4. Why Multisite/3 sites?Replicable/scalable required by regulators Accessibility (not primary reason) Establish more locations where trials will be managed Laying a foundation for a national self-sustaining network 3 is the minimum, look at STARR or Angelman, both had/ve 4. 5. How and why so fast? Because we can.  Time is Brain. Following a well trodden path SMA, Rett, Angelman, Dravet, but we are moving FASTER. 6. Does the industry really care? We are next there are so so many behind us, eager to take the resources we have access to today. Market size (Per our Census 425 US/1500 global is tip of iceberg) Multiple players reassuring each other Relatively strong amount of scientific and clinical research Haploinsufficiency (like Dravet – STOKE) – so relatively easy 7. Expensive? No. Clinical Research is more expensive than basic scientific research. Leveraging CHOP and Rare-X, setting up required networks to prepare for clinical trials.  It’s time. 8. Why Bother/Help? Now is the time for SYNGAP1, we miss it at our peril. Sure, once in these places we will still see our patients, but the study, the support and the focus may pass. Our kids don’t die, regardless of patient age, what we are doing can change their future and that of their loved ones and caregivers. If not us, then who? It is a rare exception when a non-family member gives a gift, and it is always because a family member asked.  We must ask. 9. What can I do? Donate to, share, join our Coast2Coast Clinics Challenge – two SYNGAP1 Squads in West and East – it’s critical $500k goal by end of 2024; more than $1M needed just for the SYNGAP1ProMMiS. So far, donations from $25 to $25,000 – each and every contribution matters. This requ