Patient Education Podcasts

Tuesday, December 17, 2024   Cure SYNGAP1 Conference - Resounding success https://curesyngap1.org/events/conferences/syngap1-conference-2024/ Summary: http://www.draccon.com/dracaena-report/2024aes A few comments: https://www.linkedin.com/posts/richardnovak_clinical-rare-activity-7270806450090786816-m0OV https://www.linkedin.com/posts/haley-tokars-1b2b38209_i-had-the-privilege-of-attending-my-first-activity-7272056324090159104-xFSZ https://www.linkedin.com/posts/citizen-health-inc_aes2024-rareasone-activity-7270694148825845760-AIzF https://www.linkedin.com/posts/graglia_syngap-dreem-eeg-activity-7271993151131660288-GESyhttps://www.linkedin.com/posts/praxis-precision-medicines-inc_epilepsy-aes2024-ugcPost-7273392536130355200-x2pqhttps://www.linkedin.com/posts/syngap1-argentina-382156240_por-tercer-a%C3%B1o-consecutivo-syngap-argentina-activity-7271911668522098688-JlrW https://www.linkedin.com/posts/stoke-therapeutics_aes2024-epilepsy-activity-7273445932107538433-akYf Pre-register now: December 4 & 5 – https://cureSYNGAP1.org/Pre25,    https://investor.stoketherapeutics.com/events/event-details/understanding-dravet-syndrome-unmet-need-and-potential-disease-modification STUDIES AND TRIALS ARE HAPPENING NOW - https://docs.google.com/spreadsheets/d/1oQLNi85AUbISmcW0KbsgGn4cBK_4MNuvwGlKUUKLyIQ/ Two trials to consider https://med.stanford.edu/autism/studies/pregnenolone-randomized-controlled-trial.html age 14-25 https://deepdeestudy.com/ list of sites: NJ & FL   BONES https://youtu.be/RhaJnruZCzk?si=bnPtYPsRhOChfsH0  https://curesyngap1.org/blog/navigating-a-lifetime-of-diagnoses-michaels-syngap1-journey-and-the-effects-of-anti-seizure-medications-on-bone-density/   FUNDRAISING Coast2Coast Challenge $207,974 Syngap.Fund/C2C  Join my team! https://secure.givelively.org/donate/syngap-research-fund-incorporated/coast2coast-clinics-challenge FUNDRAISE https://syngap.fund/FR  CFC: #33321 https://curesyngap1.org/srf-cfc-syngap1-combined-federal-campaign/   VOLUNTEER SPOTLIGHT:  Stacey Miller https://curesyngap1.org/team/leadership-team/stacey-miller/ Laura Bermingham of SLC6A1 https://curesyngap1.org/team/volunteers/laura-birmingham/    RESEARCH UPDATE There are 310 papers on or related to SYNGAP1 since 1998, but 54 of those are in 2024! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2024&sort=pubdate&timeline=expanded Latest are from Willsey & Frazier. Willsey: https://www.biorxiv.org/content/10.1101/2024.12.05.626924v1 Frazier: https://onlinelibrary.wiley.com/doi/full/10.1002/aur.3290   VOLUNTEER  https://curesyngap1.org/volunteer-with-srf/   SOCIAL MATTERS - 1,240 YouTube.  https://www.youtube.com/@CureSYNGAP1  - 3,883 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 11,739 Twitter https://twitter.com/cureSYNGAP1 - 47k Insta https://www.instagram.com/curesyngap1/  - 464 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/id6464522917   Episode 156 of #Syngap10  #CureSYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness  #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1

Shift Bioscience is a biotech company focused on developing cell rejuvenation therapies to defeat the diseases of aging through novel gene-based interventions.

Family caregiving is a profound and complex journey, particularly when faced with dementia or terminal illnesses. In this podcast episode, a replay of a Books & Chit Chat discussion, we delve into the experiences of Malia Kline, co-author of "Sisterly Shove." She shares her heartfelt story of caring for her aging parents and the intricate dynamics encountered with her physician sister and co-author Diane Stinson.  Malia’s caregiving journey begins with her family grappling with the twin burdens of her father’s dementia and her mother’s pancreatic cancer. Malia and Diane had differing views on their care, which involved moving each parent cross-country from one sister’s care to the other’s. Diane, a pathologist, believed different medical decisions could extend their lives. Malia wished them relief from suffering even if it resulted in death. However, these differing perspectives did not create a chasm between them; instead, they brought the sisters closer in their shared mission. Writing a book with alternating chapters from each perspective helped in this process.  For Malia, writing "Sisterly Shove" with Diane was not just a story-telling endeavor but a therapeutic journey. The collaborative process allowed them to alternate writing and editing chapters, facilitating understanding and maintaining their relationship. Their book provides an intimate perspective on caregiving challenges, sibling dynamics, and their fight against the medical establishment. Through excerpts read during the podcast, we gain insights into how the sisters' different approaches reflected their childhood personalities and shaped their caregiving strategies. Malia emphasizes the importance of journaling and writing as tools for preserving memories and coping with the complex emotions of caregiving. In this episode, you will: Understand the impact of dementia on the entire family dynamic, not just the individual.Learn how to navigate complex sibling dynamics in elder care to foster a more cohesive and collaborative caregiving approach.Discover effective coping strategies when caring for a loved one with dementia, creating a more harmonious caregiving environment.See how writing is a powerful tool for processing and managing the emotional complexities of caregiving. After the Podcast Purchase Sisterly Shove Learn more about Malia at AlzAuthors.com and “Dementia with Difficult People”  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 Solving Healthcare, we’re discussing physical activity and its profound impact on health. Dr. K explores practical strategies for increasing your step count, improving overall fitness levels, the importance of cardio, and the benefits of resistance training for strength and longevity. Tune in to learn how to enhance your fitness routine and support your health goals!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”OFFERSSANOLIVINGAt sanoLiving, our purpose is a powerful commitment: to free people from the grip and societal taboo surrounding menopause symptoms.We champion awareness, support, and barrier-free access to safe and effective treatments, and empower all to seize control of their lives, be it in their professional pursuits or personal aspirations. Our unwavering dedication to personalized equitable care propels us forward, ensuring that every individual, without exception, can thrive during midlife and beyond, unleashing their full potential and vitality.Kwadcast exclusive: Save 10% on sanoLiving!GYATA 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

Scrolling through social media for health advice can feel like a minefield. Between viral wellness trends, influencers touting quick fixes, and misinformation at every turn, how can you tell who to trust? In this episode, we sit down with doctors and digital creators Adam Goodcoff (@SeeTheMedLife) and Dr. J Mack (@Dr.JMack) to uncover how to find reliable medical advice online, why credentials matter, and how the medical community is standing up against misinformation. You’ll hear behind-the-scenes stories, practical tips for evaluating content, and how healthcare professionals are reshaping the space for the better. Whether you’re a patient trying to sift through the noise or a medical professional wanting to sharpen your social media savvy, this episode is packed with insights that matter. What You’ll Learn in This Episode: ✅ How to identify trustworthy medical information online ✅ Red flags to watch out for when consuming health content ✅ The importance of credentials and “doing your homework” ✅ Why doctors and medical influencers are stepping up to protect the space ✅ How social media is shaping healthcare practice (and why that matters to you) Key Takeaways: Not all creators are equal. Learn how to vet medical professionals online. Misinformation exists, but so do solutions. Find out how healthcare pros are self-policing social media. Good content matters. Discover the balance between education and entertainment. Connect with us: Please sign up for our SUBSTACK For more episodes, limited edition merch, to send us direct messages, and more, follow this link!  Website: https://yourdoctorfriendspodcast.com/ Email us at [email protected] @your_doctor_friends on  Instagram, TikTok, and YouTube - Send/DM us a voice memo or question and we might play it/answer it on the show or on socials! Where to Find Today’s Guests: Adam Goodcoff: @SeeTheMedLife Dr. J Mack: @Dr.JMack Medfluencers: @WeAreMedfluencers Want More? Follow us for new episodes every week. Share this episode with someone who might need better health advice online! Call to Action: If you loved this episode, don’t forget to subscribe, rate, and leave a review. Your feedback helps us reach more listeners looking for trustworthy health information.

This PodClass introduces Sarah Lorenzini’s Rapid Response RN podcast series to the RNegade CE library, exploring the role and sharing the clinical expertise of Rapid Response nurses. Participants will gain technical expertise required to identify and manage rapidly deteriorating patients, with an emphasis on a compassionate, human-centered approach to its application. Through real-life case studies, reflective practice, and expert insights, learners will deepen their clinical reasoning skills, reinforce key physiological assessments, and cultivate resilience and empathy in high-stress environments. Sarah Lorenzini is a seasoned leader and educator in Emergency and Rapid Response nursing, devoted mother of five, and host of the Rapid Response RN podcast – a welcome addition to the RNegade PodClass Library. Sarah shares her passion for caring for others in her journey from the bedside to the broadcast booth. She discusses her diverse experiences in emergency and intensive care, emphasizing the importance of recognizing early signs of decreased cardiac output in patients. Sarah highlights the need for nurses to trust their instincts and connect with patients on a human level. She also talks about her decision to start a podcast to educate and support fellow nurses, blending her love for teaching with her clinical expertise. The episode underscores Sarah's dedication to making a positive impact on nurses, the nursing profession and healthcare through the global reach of the Rapid Response RN podcast.

Dear Friends, The holidays can be a beautiful time of connection, joy, and celebration—but for caregivers, it can also be a season that amplifies the weight we carry every day. The expectations, the comparisons, the logistics of making life work for our kids—it all feels louder somehow. This episode is my friendship letter to you, my fellow caregivers, during this holiday season. It’s for the days when the to-do lists are endless, the appointments keep coming, and the social invitations feel more isolating than joyful. It’s for the moments when you catch yourself scrolling through social media, comparing your life to others, and questioning if you’re doing enough—or if you’re enough. Spoiler: You are. I recorded this as a 10-minute refuge for you—a place to breathe, to feel seen, and to remind yourself that you are not alone. Together, we’re navigating the chaos, the exhaustion, and the love that grounds it all. If you’re like me, you might feel the weight of it all a little more during this time of year. Maybe you’re thinking about your child’s progress or lack thereof, or the struggle to attend even the simplest gatherings without feeling out of place. I see you. I feel you. And I hope this episode feels like a warm hug and a reminder that you’re doing an extraordinary job in an extraordinary situation. Every day you carry your child—physically, emotionally, and mentally—is a gift. It’s heavy, yes. But it’s also rooted in a love that’s unshakable. Take a moment, my friend. This one is for you. With love and gratitude, Effie 💛 P.S. If this episode resonates, share it with another caregiver who might need it. We’re stronger when we remind each other we’re not alone.

Lumen's cutting-edge technology measures metabolism in real-time through breath analysis. Discover how this innovative health tool is empowering users with personalized insights and transforming the approach to metabolic wellness.

In this episode of Solving Healthcare, Angela Johnson, CEO of sanoLiving, joins us. Angela shares her journey through perimenopause and menopause and how it led her to create a company dedicated to women's health. She discusses sanoLiving's holistic approach, which includes education, coaching, mentoring, navigation, and the use of AI technology for personalized care. Angela highlights the need for greater workplace awareness and resources to support menopausal women, as well as the critical role healthcare providers play in addressing this often-overlooked health issue.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”OFFERSSANOLIVING At sanoLiving, our purpose is a powerful commitment: to free people from the grip and societal taboo surrounding menopause symptoms.We champion awareness, support, and barrier-free access to safe and effective treatments, and empower all to seize control of their lives, be it in their professional pursuits or personal aspirations. Our unwavering dedication to personalized equitable care propels us forward, ensuring that every individual, without exception, can thrive during midlife and beyond, unleashing their full potential and vitality. Kwadcast exclusive: Save 10% on sanoLiving!GYATA 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 all want to see behind the curtain right? Today we go there with Dr. Tommy Martin, a Med-PEDS physician with over 3 million TikTok followers. We discuss the integration of social media within the medical field, the responsibilities of being a healthcare influencer, combating misinformation, and sharing personal experiences. Dr. Martin explains his journey from content creation in 2014 to becoming an influential online presence. The conversation also covers common health concerns addressed by pediatricians, challenges faced by doctors in the digital age, and the importance of authenticity and vulnerability in building trust with an audience. 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, TikTok, and YouTube - Send/DM us a voice memo or question and we might play it/answer it on the show or on socials! 00:00 Introduction and Exciting Announcements 01:27 Meet Dr. Tommy Martin 04:01 Journey into Social Media Influencing 05:25 The Importance of Doctors on Social Media 12:57 Common Doctor Friend Questions 15:59 Creating Content and Staying Authentic 20:40 Final Thoughts and Farewell

2024-12-06 Hosts Craig Lipset, Amir Kalali, and Jane Myles were joined by Anna Yang and Elizabeth Mandel (Genentech) joined us for a discussion around defining, measuring, and benchmarking data quality with 2 ongoing hybrid studies.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.

Sensi.AI’s 24/7 Care Copilot provides home care businesses a 360-degree understanding of a senior’s physical, emotional, and cognitive needs, empowering them to age safely in place.

Desde Chile nos acompaña Valentina Mendoza, mamá de Mateo de 4 años diagnosticado en Septiembre 2024. Valentina nos comparte un pedacito de su historia sobre lo difícil de conocer un diagnóstico pero también la incertidumbre de no saberlo, y a pesar de todo que con amor y valentía están dispuestos a luchar cada día para una mejor calidad de vida. 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 23 Café SYNGAP1, Diciembre 4, 2024 #CafeSYNGAP1 #Syngap #SYNGAP1 #CureSYNGAP1 #CafeSYNGAP1Mateo #epilepsia #epilepsy #epilepsyawareness #autismo #autismawareness #discapacidadintelectual #id #enfermedadesraras #FondodeInvestigacionSYNGAP #SynGAPResearchFund #abogacia #defensadelpaciente #advocacy #patientadvocacy #neurologia #pruebasgeneticas #terapias #familia #apoyo

Barbara Drake-Vera’s caregiving journey in Peru, caring for her American father with Alzheimer's, is a unique and eye-opening story that sheds light on cultural differences in elder care. While Barbara lived in Lima, Peru with her Peruvian husband, her widowed father was diagnosed with Alzheimer’s. He lived in a four-bedroom home he previously shared with his late wife in Florida, USA, and it was soon determined he could not live alone at home. As the only child, Barbara felt compelled to come to his assistance. She knew that elder care was manageable and affordable in Lima, where multigenerational families living together was the norm. So, she and her husband made the unconventional decision to move her dad to Peru to be cared for in their home. This was a radical change for him, a proud and independent American man, World War II veteran, and former postal worker in his eighties. Together, they navigated the cultural nuances of caregiving within a Latin community that, in spite of their challenges, led to success. Barbara, the author of Melted Away: A Memoir of Climate Change and Caregiving in Peru,had had a difficult relationship with her father for many years, but this caregiving journey helped heal old wounds. Quotes “Caring for someone with dementia can be a real gift, but you don't think of it at the time because you're just trying to get through each day.” - Barbara Drake-Vera “I decided to be compassionate. It wasn't forgiveness, but I chose not to let the past be my present.” - Barbara Drake-Vera “My father, who was a self-absorbed, narcissistic jerk, was never such a nice person as when he was finally treated for Alzheimer's and cared for in Peru.” - Barbara Drake-Vera In this episode, you will: Explore the impact of cultural differences in elder care and learn how diverse perspectives can enrich the caregiving experience for individuals with Alzheimer's.Discover the benefits of multigenerational living for Alzheimer's caregiving and how it can positively influence the well-being of both the individual with Alzheimer's and the caregivers.Learn effective strategies for transitioning elders with Alzheimer's to new environments and understand the importance of creating a supportive and familiar space for them.  After the podcast Purchase Melted Away: A Memoir of Climate Change and Caregiving in Peru Note: We are an Amazon Associate and may receive a small commission from book sales. Learn more about Barbara Drake-Vera 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

Stress can worsen or exacerbate almost any medical condition. This doesn’t mean that your symptoms are all in your head but it does mean that having a healthy outlet for your stress is an important part of your treatment plan. Paul Folger is a journalist/news anchor who has ulcerative colitis – and lots of stress. He's talks about how he's navigated having this condition while also having a successful career in broadcast news.

In this episode of Solving Healthcare, hosted by Dr. K, we explore the critical topic of metabolic disease. Dr. K shares his insights on its growing impact and discusses actionable strategies for healthcare providers to play a more proactive role in prevention, management, and patient education.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

Ever wondered why your gut feels off even when doctors say everything is normal? In this perfect post-Thanksgiving episode, we explore the often misunderstood mind-gut connection with GI expert Dr. Treta Parohit. We delve into chronic GI symptoms that persist despite normal test results and discuss the gut-brain axis and its role in conditions like IBS. Learn about dietary adjustments, psychological treatment options, and lifestyle changes that can help manage these symptoms. And finally, discover how OSHI Health provides virtual, multidisciplinary care for individuals struggling with chronic GI issues. 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, TikTok, and YouTube - Send/DM us a voice memo or question and we might play it/answer it on the show or on socials! 00:00 Introduction and Post-Thanksgiving Greetings 00:01 Understanding Unexplained Tummy Troubles 01:00 Introducing the GI Expert 01:15 The Mind-Gut Connection Explained 02:27 The Importance of Poop in Diagnosing GI Issues 03:19 Stress and GI Symptoms 07:59 Multidisciplinary Approach to GI Issues 11:30 Diet and Lifestyle Modifications 16:29 The Role of Telehealth in GI Care 28:31 Conclusion and Final Thoughts

Atropos Health is reshaping healthcare by providing on-demand evidence from real-world data, elevating clinical outcomes and accelerating research. Learn how their AI-powered platform is closing critical evidence gaps and revolutionizing medical decision-making.

2024 DSF Biennial Family & Professional Conference June 20th to June 22nd. This three-day gathering united all those committed to improving the lives of individuals with Dravet syndrome – including families, caregivers, clinicians, researchers, and biopharmaceutical professionals. It provided a platform for fostering new relationships and collaborations among families and professionals alike. Recorded sessions from the conference can be accessed on demand by both virtual and in-person registrants through December 31, 2024.  [email protected]

Tuesday, November 26, 2024 Annie Passed yesterday #SynGAPAngel  https://www.linkedin.com/posts/graglia_the-syngap1-community-is-at-a-loss-as-we-activity-7267225798602874880-W9hw?utm_source=share&utm_medium=member_desktop    SRF NEWS Stories just keeps getting better: https://curesyngap1.org/podcasts/syngap1-stories/stacey-miller/ New family video, use YouTube auto translate: Juliana Meza https://www.youtube.com/watch?v=NLkqswEvAQs   Two trials to consider https://med.stanford.edu/autism/studies/pregnenolone-randomized-controlled-trial.html age 14-25 https://deepdeestudy.com/ list of sites: NJ & FL   Two studies we all need to sign up for Sign up for Frazier https://syngap.fund/eye2 https://curesyngap1.org/resources/studies/tracking-thinking-skills-and-behaviors-in-syngap1-patients/ Citizen Health https://www.citizen.health/partners/srf    Conference - Conference is 9 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 $152,592 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: Stephanie Decker https://www.linkedin.com/in/stefanie-decker-cpa-38776696/   ZOOM BACKGROUND https://drive.google.com/file/d/13jhPIBo-o1sHchEJz6KttocT1_h7GKZE/view?usp=sharing    VOLUNTEER  https://curesyngap1.org/volunteer-with-srf/   SOCIAL MATTERS  - 1,230 YouTube.  https://www.youtube.com/@CureSYNGAP1   - 3,851 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 11,779 Twitter https://twitter.com/cureSYNGAP1 - 47k Insta https://www.instagram.com/curesyngap1/ - 456 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 155 of #Syngap10  #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1

In this episode of Solving Healthcare, we're joined by Dr. Mike Hart to explore the evolving therapeutic landscape of cannabis. The conversation covers the effects of cannabinoids like THC, CBD, CBG, and CBN on sleep, pain management, and mental health, along with their applications for youth and considerations for mitochondrial health. Dr. Hart also shares insights into emerging research and the importance of proper dosing for safety and efficacy.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