PWS United

PWSA | USA
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Welcome to PWS United, a podcast for the Prader-Willi Syndrome community, brought to you by PWSA | USA. This podcast gives the latest news in research, advocacy, and family support by bringing together staff, volunteers, PWS treatment specialists, biotech and pharmaceutical representatives, caregivers, family members, and individuals with PWS. Our goal is to connect education, awareness, and resources with those living with PWS and their supporters. Join us in our mission to enhance the quality of life and empower those affected by Prader-Willi syndrome.

  1. -2 DIAS

    Ep79: Pulse 140: Residential Providers, Plunge for PWS, PRV Win, Feeding Tubes

    The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400   Pulse Header Residential Providers Conference - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight PWS Rare Disease Day-15 Ways to Raise Awareness Share Your Rare Story - Prader-Willi Syndrome Association | USA Events | Fundraisers Plunge for PWS - Campaign Email Anne at africke@pwsausa.org to be challenged. Family Zoo Day - Miami | Prader-Willi Florida Association PWSA | USA EVENTS Webpage PWSA Fundraising Pages - Campaign Podcast Ep78: Miriam Chernick: Educating the Community | PWS United Home - Global Prader-Willi Syndrome Registry Advocacy Congress Passes Five-Year Reauthorization of the Rare Pediatric Disease PRV Program! - Prader-Willi Syndrome Association | USA Official Super Bowl 60 Game Program PWSA | USA and Soleno Therapeutics Take PWS Awareness to the Super Bowl - Prader-Willi Syndrome Association | USA PWA of PA Member Questionnaire Family Support Nasogastric and Gastric Feeding Tubes: What, Why, and When They Are Needed - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Behavior and Medications for Adults - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Home - Global Prader-Willi Syndrome Registry Announcements/Resource Spotlight Stephanie Elizabeth Pircher Obituary (2026) - Windsor, MO - Hadley Funeral Home - Windsor   Intro Music: https://www.bensound.com/  License certificate #2242442    Disclaimer for show notes:  This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.

    36 min

  2. 3/02

    Ep78: Miriam Chernick: Educating the Community

    We’re excited to share our latest Sibling Advocacy episode on PWS United. In this ongoing series, we talk with siblings about how they show up for their loved ones with PWS, whether at the kitchen table, at school, among friends, in government spaces, or anywhere their sibling may need support.  This episode is hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS. Elaine spoke with sibling and author, Miriam Chernick. Miriam's brother, Daniel, is 69 and living with PWS. She spoke with Elaine about her relationship with her brother and how that has changed over the years, deciding when to speak up for him and when to let him speak up for himself, her concerns for his aging, and how she sees sibling advocacy as educating the community. She also talks briefly about her book, The Zuzu Secret. The Zuzu Secret "told in alternating points of view, is about Josie, a 12-year-old aspiring veterinarian, and Abe, her 15-year-old baseball-loving brother born with a rare disease called Prader-Willi syndrome, as they learn the risks of keeping secrets and the value of family while staying true to their dreams." Use the link to learn more and purchase your copy of The Zuzu Secret: The Zuzu Secret Novel for Elementary and Middle Grade - Beardies, Prader-Willis Syndrome, Baseball — Miriam Chernick - Author & Educator

    35 min

  3. 27/01

    Ep77: Limits, Perspective, and Mental Wellness

    This episode focuses on mental wellness, with guest Denise Rickenbach MA LMFT LADC. Denise is an Adlerian-trained Licensed Marriage and Family therapist as well as a Licensed Alcohol and Drug Counselor (LADC). Denise’s interests include addiction, codependency, family systems, anxiety, depression, obsessive compulsive disorder, grief, life transitions, and strained relationships. She was a speaker at the 2025 United in Hope conference and is the sister of PWSA | USA's beloved family support coordinator – Kristi Rickenbach. Kristi and Denise both joined Carrie and Anne on this episode on mental wellness to talk about what addictive behavior may look like and why parents of individuals with disabilities are perhaps more likely to develop these. They also discuss caregiver burden, setting limits – why and how, negative comparison vs perspective taking, disenfranchised grief, and more. Links to resources mentioned in the podcast: Caregiver Burden and Alcohol Use in a Community Sample - PMC The Michelle Chalfant Show — Life from the Adult Chair - Podcast - Apple Podcasts The Anxious Generation — from a book to a movement Addiction Expert, Speaker and Best-selling Author Dr. Gabor Maté

    57 min

  4. 21/01

    Ep76 Pulse 139: Art Share Launch, Social Media Use, Voices on VYKAT Testimonial

    The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400   Rare Aware Art Share Rare Aware Art Share Back for 2026: PWS Advocacy and Awareness - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Events | Fundraisers Clint Hurdle Hot Stove Dinner Hub - Prader-Willi Syndrome Association | USA PWSA | USA EVENTS Webpage PWSA Fundraising Pages - Campaign Podcast Ep75: Global PWS Registry 2.0 | PWS United Home - Global Prader-Willi Syndrome Registry Advocacy PWSA | USA and Soleno Therapeutics Take PWS Awareness to the Super Bowl - Prader-Willi Syndrome Association | USA D.C. Fly-In 2026 - Prader-Willi Syndrome Association | USA Rare Disease Week - EveryLife Foundation for Rare Diseases Rare Disease Week 2024 Colors of Hope: Webinar Registration - Zoom PWSA NJ Registry Update Family Support How Individuals with PWS Can Use Social Media Safely - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Hemoglobin Levels - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Harmony Biosciences Guides to Over $1 Billion in WAKIX® Revenue in 2026; Advancing Robust Late-Stage Pipeline With Potential for Long-term Value Creation | Harmony Biosciences Prader-Willi Syndrome and VYKAT™ XR (diazoxide choline) Shedding Light on Sleep Disorders in Prader-Willi Syndrome | January 29, 2026 TREND Connect Announcements/Resource Spotlight info@pwsausa.org   Intro Music: https://www.bensound.com/  License certificate #2242442  Music: www.purple-planet.com Disclaimer for show notes:  This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.

    49 min

  5. 13/01

    Ep75: Global PWS Registry 2.0

    The Global PWS Registry, sponsored by FPWR and hosted by NORD, is a database of information about individuals with Prader-Willi syndrome. Informed by caregivers of individuals with PWS, the Global PWS Registry, now in its 10th year, is one of the most powerful tools we have to understand PWS. The registry has guided research, played a crucial role in advancing new drugs and therapies, shaped clinical trials, informed medical guidelines, and has helped elevate the voices of the PWS community.  Stacy Ward, PWSA | USA's CEO, sat down with key figures of the Global PWS Registry; Dr. Theresa Strong, Director of Research for FPWR, Dr. Jessica Bohonowych, Associate Director of Research for FPWR, Lisa Matesevak, Study Coordinator for FPWR, and Lynn Garrick, Medical/Research Coordinator for PWSA | USA.  They discussed the many surveys available and the importance of gathering this data from families. Not only are these surveys helping to inform the medical and research community on the many nuances of PWS, but it can also serve as a living medical record for families. The Global Registry has been updated to a more intuitive platform, making it easier for families to complete surveys and view the information submitted by the community. They also discuss the exciting implications for the upcoming VYKAT survey which will help document in real-time the effects of the first-ever FDA approved treatment for hyperphagia in PWS.  To learn more and sign up for the registry, please visit Home - Global Prader-Willi Syndrome Registry If you have questions, contact Lisa Matesevak or Jessica Bohonowych at info@fpwr.org

    1 h 6 min

  6. 6/01

    Ep74: Pulse138: DC Fly In Applications, Mental Wellness, Save the Dates for 2026

    The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400   Events | Fundraisers D.C. Fly-In 2026 - Prader-Willi Syndrome Association | USA 2026 Residential Providers Conference - Prader-Willi Syndrome Association | USA 2026 Moms' Retreat - Prader-Willi Syndrome Association | USA 2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA PWSA Fundraising Pages - Campaign Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Angel Drive Hope in Action: Where Community Becomes Family — Annie’s Story Hope in Action - YouTube Podcast Ep73: Stacy's End of Year Message | PWS United Advocacy Rare Disease Week - EveryLife Foundation for Rare Diseases Rare Disease Week 2024 Family Support Sibling Spotlight: Ella Frazier’s Heart for Service - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: PWS BMI Ranges - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research PWSA | USA’s 2025 Research Year in Review - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight Exercise, Movement, and Mental Health - Prader-Willi Syndrome Association | USA   Intro Music: https://www.bensound.com/  License certificate #2242442

    26 min

  7. 30/12/2025

    Ep73: Stacy's End of Year Message

    2025 was a year of growth, innovation, and strengthened commitment. We expanded family support, enhanced clinical and crisis services, grew our advocacy and education efforts, and continued advancing critical research. This episode is a message from PWSA | USA CEO Stacy Ward about the incredible work done by PWSA | USA staff, volunteers, and supporters throughout this past year, along with our deep and heartfelt gratitude. Intro Music: https://www.bensound.com/  License certificate #2242442  Music: www.purple-planet.com

    11 min

  8. 23/12/2025

    Ep72 Pulse 137: End of Year Reflection, Holiday Traditions and Tips, Clinical Trial Wrap-Up

    The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Angel Drive Angel Drive 2025 - Prader-Willi Syndrome Association | USA Stacy’s Thank You Message Hope in Action - YouTube PWSA Memory PWSA Library - Prader-Willi Syndrome Association | USA Events | Fundraisers Family Zoo Day - Miami - Prader-Willi Syndrome Association | Florida Inicio - Asociación del Síndrome de Prader-Willi | Florida A Bow for Áine Mirella: A Night of Music, Joy, and Hope for Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA Claus for a Cause Thank You Message PWSA Fundraising Pages - Campaign Spotlight on Hope Share Your Story - Prader-Willi Syndrome Association | USA Podcast Ep71: Christian Garzia: Humor, Fairness, and Protection | PWS United Advocacy PWSA | USA at the EveryLife Community Congress: Looking Back at 2025 and Mobilizing for 2026 - Prader-Willi Syndrome Association | USA Family Support Adapting Holiday Traditions for Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA Melanie's Air-Fryer Chanukah Latkes (PWS-Friendly Potato Pancakes) - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Group Home Placement - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Reflections on the End of a Trial - Prader-Willi Syndrome Association | USA Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight Tips and Techniques for a Safe Holiday Season - Prader-Willi Syndrome Association | USA   Intro Music: https://www.bensound.com/  License certificate #2242442

    35 min
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Excerto

Sobre

Welcome to PWS United, a podcast for the Prader-Willi Syndrome community, brought to you by PWSA | USA. This podcast gives the latest news in research, advocacy, and family support by bringing together staff, volunteers, PWS treatment specialists, biotech and pharmaceutical representatives, caregivers, family members, and individuals with PWS. Our goal is to connect education, awareness, and resources with those living with PWS and their supporters. Join us in our mission to enhance the quality of life and empower those affected by Prader-Willi syndrome.

Informação

  • Autoria
    PWSA | USA
  • Anos em atividade
    2024 - 2026
  • Episódios
    80
  • Classificação
    Para todos
  • Copyright
    © Copyright 2024 All rights reserved.
  • Site do programa
    PWS United