Patient Education Podcasts

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

In this episode of Prevention Over Prescription with Dr. K, Dr. K dives into all things nutrition, sharing practical tips on optimizing your diet, cutting out processed foods, and making the most of supplements. He breaks down key strategies for building a healthier lifestyle, fueling your body properly, and making informed food choices. Don't miss this insightful solo episode! Hosted on Acast. See acast.com/privacy for more information.

2022-03-18 Host Craig Lipset was joined by Irfan Khan (Circuit Clinical), Kelly McKee (Evinova), and Kerry Hicks (HW Investment Partners) for a conversation around the application of patient experience in clinical research, health ratings for providers, and more.You can join TGIF-DTRA Sessions live on LinkedIn Live 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.

Reimagining Pediatric Care with Imagine Pediatrics For families of medically complex kids, the healthcare system often feels broken—long hospital stays, insurance battles for basic needs, and constant caregiving without real support. But what if there was a better way? In this episode, I’m joined by Taylor Beery, co-founder of Imagine Pediatrics, Jody Copp, a full-time rare disease dad of two boys with Combined oxidative phosphorylation deficiency type 13 associated with a mutation in the PNPT1 gene and whose family has experienced firsthand the impact of their care model. Imagine Pediatrics is changing the game by providing 24/7, in-home, virtual-first medical care designed to keep kids safe at home—not in the hospital. He also has a rad foundation that we will chat about in a future episode: Raising Wheels Foundation If you are in Texas, Florida, and District of Columbia you have access to Imagine Pediatrics! We discuss: The problems with the current healthcare system for medically complex kids Why "safe days at home" should be the goal of pediatric care How Imagine Pediatrics partners with families rather than making them fight for care The economic case for home-based care and why insurance should want this model Walker’s legacy— how Taylor’s son inspired a movement to improve pediatric healthcare Kids Join the Fight Listen now & share with families who need this

In this podcast episode, host Karen engages with Cheryl Field, an expert in nursing informatics, to discuss the integration of technology and artificial intelligence (AI) in healthcare. Cheryl shares her unconventional journey into nursing and emphasizes the critical role of nurses in developing and implementing technological solutions. She highlights the importance of nurses' involvement in creating effective AI models and stresses the need for responsible AI use. Cheryl encourages nurses to actively participate in technological advancements, find their voice within the professional community, and embrace opportunities to shape the future of healthcare. The episode serves as a motivational call to action for nurses to lead in healthcare innovation. GET NURSING CES FOR THIS PODCLASS HERE https://rnegade.thinkific.com/courses/bedside-to-bytes Cheryl's Background in Nursing (00:02:18) Cheryl shares her unconventional journey into nursing and her passion for the field. The Role of Nursing Informatics (00:07:28) Explanation of nursing informatics and its importance in understanding clinical data and trends. Automating Clinical Processes (00:12:09) Discussion on how automation can streamline clinical documentation and improve patient care. Decision-Making in Nursing (00:14:59) The importance of data aggregation for making informed decisions in nursing management. The Creative Side of Technology (00:18:13) Cheryl reflects on her excitement for simplifying complex systems through technology. Understanding Congestive Heart Failure (00:19:51) Cheryl explains congestive heart failure using a metaphor about trash overflow in a house. Introduction to MDS (00:23:20) Cheryl introduces the Minimum Data Set, emphasizing its significance in skilled nursing care. Predicting Hospital Readmissions (00:26:10) Cheryl describes efforts to predict patient readmissions to hospitals using data analytics. Government Regulations on Readmissions (00:27:29) Cheryl explains how government penalties for readmissions impact nursing home operations and patient care. Pattern Recognition in Healthcare (00:31:20) Cheryl elaborates on how data patterns can predict patient needs and improve healthcare delivery. Machine Learning in Nursing (00:34:28) Cheryl explains how machine learning can refine predictions for patient care based on historical data. Evolution of AI in Healthcare (00:39:04) Cheryl discusses the historical context of AI technology and its growing relevance in healthcare. The Digital Shift in Healthcare (00:39:58) Discussion on the transition from paper to digital records in healthcare and its implications for data accessibility. Technology as Support, Not Replacement (00:44:17) Emphasis on technology's role in assisting healthcare professionals rather than replacing human interaction in patient care. AI and the Future of Nursing (00:45:19) Discussion on the potential of AI and robotics in nursing, and their limitations in replacing human nurses. Language Models and Nursing Communication (00:46:06) Explanation of how language models function and their challenges in understanding nursing communication styles. Reducing Administrative Burdens with AI (00:47:13) Potential for AI to alleviate repetitive tasks, allowing nurses to focus more on patient relationships. Fluid Workforce Management (00:57:49) Exploration of the need for flexible staffing solutions that prioritize nurse health and well-being for better outcomes. Excitement about AI in Nursing (01:03:47) Cheryl shares her enthusiasm for nurses' involvement in AI and its transformative potential in healthcare. Responsible AI in Healthcare (01:07:02) Explaining the need for ethical standards and regulations in AI applications in nursing. Nurses' Call to Action (01:20:04) Cheryl emphasizes the importance of nurses engaging in technology and innovation for successful healthcare outcomes. GET NURSING CE'S ... SEE OUR LIBRARY https://rnegade.thinkific.com/

Tuesday, March 18, 2025 - Week 12 SYNGAP1 & Unmet Need Preface  Let’s separate the notion of symptoms and disease description with lived caregiver and patient experience.  When you do this, charts about seizure progression and symptom list lose their sterile veneer and become horror stories.   This is critical because clinicians have become desensitized to patients' complaints and SYNGAP1 caregivers are tired of trying to explain to people how this disease hits you. SRD is slow moving, but suddenly changing and completely enervating. Medical: Existing treatments/polypharmacy is woefully inadequate & worsens as patients age:   Unrelenting intractable and worsening seizures cause side effects and require constant vigilance and partnership with Neuros Medication changes can cause issues such at rage Long-term side effects, e.g., bone health issues, from chronic medication use Drug-drug interactions (DDIs) are rarely addressed despite complex prescriptions from multiple specialists (Neuro, Psych, Primary, supplements, etc.) Some go to challenging non-pharma options: Not to mention tube feeding, keto diet, and neuro surgical options like VNS/CC as well as hip surgery for severe gait. Behavioral & ID: Our kids have enough physical ability to make behavior very challenging: Pain and behavior compounded by being non-verbal as they grow   Violence against family—bites and scratches   Violence against self, just sheer frustration Elopement & no sense of danger as a constant stress/burden  ABA can be helpful if the team is high caliber but often fails due to staffing, rigidity, insurance or lack of skill. Family: Toll on caregivers & family is a heavy cost that is rarely counted:   Almost all of our kids have severely disrupted sleep and that is a form of torture for the whole family.  Exhaustion from the diagnostic journey, assessments, and caregiving. Marriages fall apart under the pressure. Nobody can care for our kids—no respite, no support, schools fail. Parents are afraid to die, fearing what will happen to their children. Siblings are the last to be noticed but first affected.   Emphasize: The patients are very complex, the system isn’t working, families are in crisis, and they need real solutions.   Parents will travel:   We’ve had 100 patients go to CHOP from all over the USA, no cure here, just expertise. Example: the day I wrote this presentation I saw these 4 Facebook posts:  VHM at CHOP https://www.facebook.com/virginie.herradormcnamar/posts/pfbid02NbqkEsH84XtaoNc8qma5LsPEsC16NVGmzgq6fXRb3opP4rGJjP2WjGkMUGhbBTjpl B at CHCO https://www.facebook.com/beata.tarasiuk.56/posts/pfbid0YJ4AxBuxtzoeqHyHHtwP5tLR8jGgRjxzxkJ  CB at WCMC https://www.facebook.com/corey.baysden/posts/pfbid0c7RZtzm8hsB3k5mTGpmiXhaq7xzL9vLptfVn5FYZ8ZcFEuxqiYETHss7eUxpwo8Bl RR at UCSF https://www.facebook.com/permalink.php?story_fbid=pfbid02JvfR1G33tAg9XRZVXMidstcZYcEjzrqFeutvepYoPVb1RbjTEF1QCJj4kbDdScKQl&id=100088305909698    Episode 166 of #Syngap10  #Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS

In Part 2 of our conversation, Catherine McKenzie discusses the unique format of GMA3 and how health topics are a foundational element of the show. She explains how the team selects health topics, the real-world impact of their health stories, and the media’s role in public health. She shares her views on the influence of social media, the challenges of combatting misinformation, and the importance of non-partisanship in health reporting. Key Takeaway Access credible health news, whether it's on TV, online, or in print. Rely on information that's science-based – vetted by clinical professionals and experts, Even when the source is credible, read beyond the headlines. The devil is always in the details. Links GMA3: https://www.goodmorningamerica.com/author/gma3 Connect with Archelle ArcHealth Newsletter: https://www.archellemd.com/newsletter Email: SpeakUpForYourHealth@gmail.com Instagram:  https://instagram.com/speakupforyourhealth Facebook: https://www.facebook.com/speakupforyourhealth #GoodMorningAmerica #catherinemckenzie #healthnews #ABCnews #publichealth #medicalreporting #jenniferashton #dariensutton

Do you want to experience the healing power of family relationships and find hope and peace amidst the challenges of caregiving? In this episode we discuss a solution. Our special guest is Susan Landeis, author of "In Search of Rainbows: A Daughter’s Story of Loss, Hope and Redemption." Susan is an inspiring voice in the Alzheimer's and dementia caregiving community. Her memoir delves into her journey of caring for her mother with Lewy Body Dementia, while navigating a lifelong, complex, and estranged relationship. Susan's candid storytelling and experiences offer invaluable insights into the challenges of caregiving and the transformative power of forgiveness and healing within family dynamics. As a member of the AlzAuthors management team, Susan brings a wealth of knowledge and compassion to her work, providing support and understanding to those facing similar struggles. Her personal journey and dedication to raising awareness of dementia caregiving make her a compelling and relatable guest for today's episode. Estrangement within families can present additional challenges when taking on the role of caregiver. Navigating this complex dynamic requires open communication, patience, and a willingness to address underlying issues. Caregivers like Susan have found that caregiving can offer a pathway to reconciliation, understanding, and forgiveness, ultimately bridging the gap created by estrangement. In this episode, you will: ·      Discover effective coping strategies for Lewy Body Dementia, bringing peace of mind to both you and your loved one. ·      Learn how caregiving can become a catalyst for healing family relationships, fostering understanding and connection. ·      Find ways to navigate the challenges of estrangement while providing loving care for your family member. ·      Explore the powerful process of writing a memoir on dementia caregiving, capturing and preserving precious memories. ·      Gain valuable insights into managing senior health and well-being, empowering you to provide the best care possible. After the Podcast Buy “In Search of Rainbows” Read Susan’s AlzAuthors Post Note: we are an Amazon Associate and may receive a small commission on book sales at no additional cost to you or the authors. Learn more 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

In this episode of Prevention Over Prescription with Dr. K, we're joined by Jacy Cunningham to explore his journey from athlete to wellness advocate. Jacy shares how movement, meditation, and journaling have been key to his personal growth and healing, especially in coping with loss. He introduces the concept of "working in" as a complement to physical fitness, emphasizing internal growth, self-care, and accountability. Plus, he explains why his daily ritual of 100 burpees isn’t just a workout—it’s a mindset shift. The conversation highlights the importance of mental resilience, community, and simple daily practices in fostering overall well-being. Hosted on Acast. See acast.com/privacy for more information.

Show NotesSRF’s CSO Kathryn Helde, PhD talks with Rainy about her son Joey - living in a group home, rock climbing, DIR therapy, genetic testing & reports, and advice on avoiding isolation. "He went to a group home. That took a long time to come to terms with emotionally. That's so much harder than anything else I've ever done."All episodes are available at ⁠cureSYNGAP1.org/Stories⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠.Connect with Kathryn:cso@cureSYNGAP1.orgKathryn's SRF bioConnect with ⁠⁠⁠⁠⁠⁠Rainy:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠rainy@cureSYNGAP1.org⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Rainy's SRF Bio⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠@Hope4theCure⁠⁠⁠⁠YouTube - ⁠⁠⁠⁠⁠@Hope4theCure⁠⁠⁠⁠⁠Facebook - ⁠⁠⁠⁠⁠Hope SelahMay⁠⁠⁠⁠SYNGAP1 Stories ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Episode 028⁠⁠⁠⁠SRF & SYNGAP1 Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠What is SYNGAP1-related disorders?⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Syngap Research Fund⁠⁠ - ⁠⁠⁠⁠⁠⁠⁠⁠⁠https://cureSYNGAP1.org/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 Resources for Newly Diagnosed Families⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Pre-register for the 2025 Cure SYNGAP1 Conference in Atlanta⁠⁠⁠⁠⁠⁠⁠Donate to SRF⁠⁠⁠⁠⁠⁠⁠⁠Get 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 Excellence⁠⁠⁠Clinical Trials⁠⁠⁠⁠⁠⁠Frazier Eye Study⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Citizen Health⁠⁠⁠More Links:Heather Mefford, MD, PhD⁠Why Getting a Genetic Diagnosis Matters⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠How to Get Free Genetic Testing⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Special Needs Trusts⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Sprint4Syngap 2025⁠⁠⁠ (⁠⁠donation page⁠⁠ and ⁠⁠resource guide⁠⁠)⁠⁠⁠⁠⁠⁠SRF Grants⁠⁠⁠⁠SRF Press Releases⁠⁠⁠⁠SRF'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 032 SYNGAP1 Stories, March 18, 2025#SYNGAP1StoriesJoey #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp32 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Elopement #Behavior #Communication #SelfHelp #Volunteer #Conf25 #RockClimbing #Hippotherapy #Therapy

In this episode of Beyond Clinical Walls, Dr. Bayo underscores the importance of comprehensive eye exams, which reveal more than just vision issues—they can indicate overall health concerns as well. Joined by Dr. Donahue, an optometrist with deep family roots in eye care, the discussion illuminates how routine eye examinations are a crucial aspect of preventive health care. Dr. Donahue highlights that eye exams can detect early signs of systemic conditions like diabetes, high blood pressure, and high cholesterol, long before other symptoms manifest. This episode reveals that an optometrist's role extends beyond prescribing glasses or contacts; they are pivotal in catching health issues early through the unique vantage point of eye health. The conversation also tackles common misconceptions about eye health, emphasizing that good vision does not negate the need for regular eye check-ups. Dr. Donahue shares insights on the critical differences between vision tests and thorough eye health examinations, stressing that both adults and children should undergo regular eye assessments to catch issues like glaucoma—often dubbed the "silent thief of sight"—before they cause severe damage. Dr. Bayo and Dr. Donahue discuss actionable tips and resources available for those who may not have direct access to eye care due to financial constraints, highlighting programs that provide essential services for eye health maintenance and care.

This episode is our contribution to Podcasthon, a global collaboration of podcasters to raise awareness of their favorite charities. Our favorite charity is us. We are a 501 (c) (3) organization. Please be generous. Donate at AlzAuthors.com. In this deeply personal and informative episode, hosts Marianne and Christy are joined by panelists Jean Lee, Ann Campanella, Loretta Woodward Veney, and David Iverson, all caregivers for ten or more years, as they explore the five pillars of caregiving – emotional toll, physical strain, financial difficulties, social isolation, and coping strategies. Key Themes & Takeaways: Emotional Toll: Caregivers shared moving personal stories of grief, guilt, and anger while navigating their loved ones’ dementia journeys. There is strength in allowing yourself to grieve, as highlighted by Ann Campanella, who stated, “Grieving clears the way to bring in joy and beauty.” Physical Strain: From exhaustion to disruption of sleep cycles, the taxing demands of caregiving impact physical health drastically. David emphasized practicing self-care through exercise and staying physically active as a necessary coping mechanism. Financial Difficulties: A significant challenge highlighted was the cost of care, with inputs from Jean, Loretta, and Dave emphasizing the overwhelming need for better elder care policies. Loretta noted how caregivers should proactively explore local programs like Medicaid waiver lists early on for financial support. Social Isolation: Many caregivers expressed feeling isolated, especially given the stigma surrounding dementia diagnoses. Loretta found joy in keeping her mother socially active, even organizing creative activities like Lego building to keep her mother engaged. Strategies for Coping: Incorporating joy into daily routines was a recurring theme, especially for Loretta, who promised her mom “a little bit of joy every day.” The authors shared reminders to stay connected with loved ones and leverage support groups for affirming connections and shared experiences. After the Podcast Learn more about the panelists Purchase their books Alzheimer’s DaughterBeing My Mom’s MomMotherhood: Lost and FoundWinter Stars: An elderly mother, an aging son, and life's final journey  Note: we are an Amazon Associate and may receive a small commission on book sales at no additional cost to you or the authors.  Learn more 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

Hola y bienvenidos de nuevo al Café Syngap1 Podcast! Hoy tenemos una historia centrada en la lucha y amor incondicional; Jaime nos comparte su experiencia como cuidador exponiendo las dificultades y resiliencia del día a día.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 26 Café SYNGAP1, Marzo 13, 2025#CafeSYNGAP1 #Syngap #SYNGAP1 #CureSYNGAP1 #CafeSYNGAP1Kai #epilepsia #epilepsy #epilepsyawareness #autismo #autismawareness #discapacidadintelectual #id #enfermedadesraras #FondodeInvestigacionSYNGAP

Please give my video a watch and SAVE MEDICAID!   Do it as if your child's life depends on it. I want to emphasize the importance of the current moment regarding Medicaid, not to alarm you, but to underscore the urgency of the situation. This is a critical time for the well-being of our loved ones, and the need to act has never been more pressing.   For over 30 years, I’ve been advocating at the state legislature level and with congressional members, but the potential cuts to Medicaid we are facing now are unlike anything we've encountered before. We must work together to protect this vital resource. Your support could make a significant difference.   To reach out to your Congressional Member consider these two resources: - Epilepsy Foundation: https://www.epilepsy.com/advocacy/advocate  - ARC of US: https://p2a.co/lRPDZ5C  What Medicaid means to your family: https://action.thearc.org/3jLx90b 

Tuesday, March 11, 2025 - Week 11   CHCO Press Release https://www.linkedin.com/posts/curesyngap1_syngap1-prommis-research-activity-7305258171642654723-5h2e fill spots, email info@curesyngap1 dot org   SYNGAP1 ProMMiS #SynGAProMMiS https://curesyngap1.org/resources/studies/syngap1-prommis/ Need your Voice on Unmet Need Please contact me with stories and permission to share. Mike@    PubMed is at 11 YTD https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2025&timeline=expanded&sort=date&sort_order=asc   Willsey Lab on Gut Motility, congratulations to Kate McCluskey https://pmc.ncbi.nlm.nih.gov/articles/PMC11885846/pdf/41467_2025_Article_57342.pdf   Citizen Health Data in there! https://www.linkedin.com/posts/citizen-health-inc_citizenhealth-autism-guthealth-activity-7304881198676197376-ng3vCitizen Health -  https://www.citizen.health/partners/srf or http://curesyngap1.org/citizen   Family Conf Video on Drug Repurposing https://www.youtube.com/watch?v=1S_A1jO28-c - Corey, Lindsay, Zoe and Earl.   Thank you Lindsay.   Unravel BioSciences Discussion/Podcast Short: https://www.youtube.com/watch?v=xcB8pv2lKRI Long: https://www.youtube.com/watch?v=CYb0ghaRKm8  LinkedIn: https://www.linkedin.com/posts/unravel-biosciences_raredisease-combinedbrain-drugdevelopment-activity-7302440189782540289-u4sl   Bio-Repository and Roadshow Dates https://docs.google.com/presentation/d/1IjaHILXj7AlBDlbTJgvYrkBS_0bnI8VCnTIiPXJ7JGM/edit#slide=id.g32f5fa46d32_0_3   April 24-25th Nashville, TN June 14-15th Westminster, CO June 18-21th St. Louis, MO June 27-28th Phoenix, AZ July 10-12th Boston, MA July 18-19th Denver, CO July 19-20th Westminster, CO July 19-20th Windsor Locks, CT Sept/Oct TBD Philadelphia, PA Dec 4-5th Atlanta, GA   Share glowing reviews of SRF on Great Non-Profits! https://www.cureSYNGAP1.org/GNP   ICD-10’s as discussed in #S10e163 (https://www.youtube.com/watch?v=iDvW7HfzSGA) next meeting cancelled.  Time to go for ICD-11s. https://www.cdc.gov/nchs/icd/icd-10-maintenance/meetings.html DoD Funding https://umdf.org/cdmrp_cuts_action/ #MEDICAIDCANTWAIT https://thearc.org/policy-advocacy/medicaid/medicaidcantwait/   Episode 164 of #Syngap10  #Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS

myTomorrows combines AI with healthcare expertise to solve the complex challenge of matching patients to clinical trials, making advanced treatment options more accessible worldwide.

In this episode of Prevention Over Prescription with Dr. K, we're joined by Andrew McConnell, co-founder of Alively.com, to explore the keys to thriving in life. Andrew shares insights from his journey as a former competitive swimmer turned entrepreneur and author, highlighting the five core pillars of health: fitness, nutrition, mindset, sleep and recovery, and social connection and purpose. We discuss the role of stress management, mindset shifts, and the importance of taking action to improve overall well-being. Andrew also explains how Alively.com connects individuals with trusted health and wellness role models for personalized recommendations. Hosted on Acast. See acast.com/privacy for more information.

Can you exercise with AFib? Know someone with AFib—maybe a parent or loved one—who wants to stay active but isn’t sure how? In this episode, Dr. Sean Swearingen, sports cardiologist, breaks down exactly how you can stay active while managing atrial fibrillation, without putting your heart at risk. Whether you're new to AFib or just looking to get back into exercise, you’ll get expert advice on safe workouts, heart health monitoring, and when to reach out to your cardiologist. In This Episode, You’ll Learn: Exercising with AFib: Why staying active is crucial for your heart, and how to safely incorporate exercise into your routine if you have AFib. How to Start Safely: Starting or returning to exercise after an AFib diagnosis? Dr. Swearingen shares the best tips for building up your fitness gradually and safely. Heart Rate Monitoring: The best tools to track your heart health during workouts, including the Zio Patch and Apple Watch, to make sure your AFib stays under control. When to Consult Your Cardiologist: How to know when it’s time to check in with your cardiologist, and how to get personalized advice on exercising with AFib. The Role of Sports Cardiology: Why seeing a sports cardiologist can be a game-changer for safely managing AFib while staying fit. Who Should Listen: Anyone living with, or knows someone living with, AFib who wants to get back into exercise safely. People interested in sports cardiology and how it can help you stay active with heart conditions. Anyone who wants to learn to have a healthier heart Resources Mentioned in This Episode: Rush University Sports Cardiology: Learn more about Dr. Swearingen's sports cardiology practice here. Apple Watch: A great tool for tracking heart rate and rhythm during exercise. Find out more here. Zio Patch: Continuous heart monitoring for those with AFib. Learn more here. American Heart Association: Exercise tips and guidelines for those with heart conditions. Check out their recommendations here. Why You Should Listen: If you’ve been diagnosed with AFib, you’re not alone. But that doesn’t mean you have to stop being active. Dr. Swearingen gives you the expert advice you need to stay safe, stay fit, and stay healthy with AFib. Don’t miss out—tune in now! Connect with Us: Please sign up for our SUBSTACK so you can forward this information to all your friends inboxes! For more episodes, merch, or to send us direct messages: Website: https://yourdoctorfriendspodcast.com Email: yourdoctorfriendspodcast@gmail.com Socials: Follow @your_doctor_friends on Instagram, TikTok, and YouTube. DM or send us a voice memo—we might feature it on the show! atrial fibrillation, AFib, exercise with AFib, heart health, sports cardiology, heart monitoring devices, Zio Patch, Apple Watch, managing AFib with exercise, post-COVID heart health, exercise guidelines for heart disease, living with AFib, sports cardiology, arrhythmias, fitness for heart patients