PWS United

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.

PWS United is a business podcast hosted by PWSA | USA, with 104 episodes on record and a Required Pod Score of 80. PitchCentric scores this show on Booking Probability, Listen Score, and live audience signals refreshed every 24 hours.

PWSA | USA hosts PWS United, a business show with 104 episodes published.

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  Episode #105

  Ep104: Leave a Lasting Legacy with PWSA | USA (Episode Re-Air)

  Aug 18, 202629 min

  This episode is a re-air from August of 2025 on the topic of planned giving and leaving a lasting legacy with PWSA. August is Make-a-Will Month, and we have some new resources, like our legacy tips, on the how and why of supporting the work of PWSA | USA through the avenue of planned giving. Thank you again to Tim Hearn, father to David (living with PWS) for an insightful and inspiring conversation on leaving a lasting legacy. Planned Giving | PWSA USA Support the PWS Community for Generations: Tips for Leaving a Legacy - Prader-Willi Syndrome Association | USA Intro Music: https://www.bensound.com/ License certificate #2242442

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  Episode #104

  Ep103: PWS Roadshow: Building Community, One Stop at a Time

  Aug 4, 202622 min

  The PWS Roadshow is a series of events throughout the Pacific Northwest, put on by the Washington/Oregon chapter of PWSA and sponsored by Soleno Therapeutics, the makers of VYKAT XR, the only FDA-approved treatment for hyperphagia. It is an opportunity to meet local PWS families, ask experts and connect with PWS professionals in the area, learn about new and potential treatments for hyperphagia, and connect with Soleno PACE for product support and resources. As Vonnie Sheadel, chapter president, host of the PWS roadshow, and mom to Bill (46, living with PWS) wrote: “Because PWS is rare, families frequently face isolation, often traveling vast distances just to find specialized support. The PWS Roadshow is actively changing that narrative by establishing immediate, tight-knit local circles of permanent support right in these families’ backyards—including connecting with individuals and families who may have been missed by traditional outreach in the past.” In this episode you’ll hear from Vonnie herself, Cainan (adult living with PWS), and his mom Heather, PWS parents Joseph and Erin, and PWS United's co-host Anne and her daughter Freya (living with PWS), all talking about the Medford PWS Roadshow, along with the value and importance of creating and attending events like these. PWS Link Map | Mysite Events | PWSA-OR-WA.ORG Intro Music: https://www.bensound.com/ License certificate #2242442 Music: www.purple-planet.com

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  Episode #103

  Ep102 Pulse 151: Disability Pride, Podcast Changes, Voices on VYKAT 6

  Jul 21, 202654 min

  The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Join our Newsletter - Prader-Willi Syndrome Association | USA Pulse Header The Road to the Americans with Disabilities Act (ADA) - Prader-Willi Syndrome Association | USA What Does Disability Pride Month Mean to Me? - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight Medical-Reference-Guide-for-Parents-Rebranded-2022.pdf Events | Fundraisers Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign Residential Providers Conference - Prader-Willi Syndrome Association | USA PWS Community Day Registration (Los Angeles) Survey PWS Community Day Registration (San Franscisco Bay Area) Survey PWSA Events Podcast Ep101: Transitioning PWS to Adulthood | PWS United Advocacy Meet Our Equity Committee: Ashish Rishi - Prader-Willi Syndrome Association | USA Calling Nevada PWS Families - Prader-Willi Syndrome Association | USA Family Support Why We Gather - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Deconditioning After Hospital Stay - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research MedPanel Research: survey.alphadetail.com/wix/8/p451407915088.aspx PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA 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.

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  Episode #102

  Ep101: Transitioning PWS to Adulthood

  Jul 14, 202654 min

  PWS Moms, Jen Garzia (mom to Rocco, 22), Denise Servais (mom to Maya, 22), and Elaine Towle (mom to James, 40) share the challenges, successes, and timelines of helping their loved one transition into adulthood. Guardianship, social security benefits, day programs, and medical care are the focus of this conversation. But the thread through it all is the call for adaptability. How to shift gears, perspectives, and expectations when one solution isn’t a good fit. What it looks like when, after twenty years of following the plot line, you realize the systems in place do not comply. As PWS mom Jen Garzia says in this episode, “the systems aren’t as advanced as our kids have become.” This is not an episode on the frustrations and grief of broken and archaic systems, of a society still learning how to care for its more vulnerable members, but one of versatility, steadfastness, and the wisdom, creativity, and effectiveness of adapting. Intro Music: https://www.bensound.com/ License certificate #2242442 Music: www.purple-planet.com

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  Episode #101

  Ep100 Pulse150: 100 Episodes, Convention, State Specific Events

  Jul 7, 202630 min

  The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Pulse Header 2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA Caribe Royale Resort | Resort in Orlando Florida | Official Site (7) Facebook Live | Facebook Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight Understanding Constipation in Prader-Willi Syndrome Events | Fundraisers PWS Community Day Registration (Los Angeles) Survey PWS Community Day Registration (San Franscisco Bay Area) Survey PWS Roadshow Heading to Spokane, Washington, July 11: Summer Tour Breaks Isolation and Builds 'Instant Villages' Across the Northwest - Prader-Willi Syndrome Association | USA PWSA Events Podcast Ep99: Navigating School Transitions, Trainings, Non-Negotiables, and More with Destiny Pacha | PWS United Advocacy Calling Nevada PWS Families - Prader-Willi Syndrome Association | USA Access to Services for Individuals with PWS in Georgia Survey Family Support Conference Recap from a Grateful Mom and a Happy Daughter - Prader-Willi Syndrome Association | USA Prader-Willi Syndrome Association of Minnesota | PWSA-MN Ask Nurse Lynn: Supporting a Long Life with PWS - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research MedPanel Research: survey.alphadetail.com/wix/8/p451407915088.aspx TREND Community: Shedding Light on PWS and Sleep - Understanding Cataplexy PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA Announcements PWSA | USA Board of Directors Member Spotlight: John Lens - Prader-Willi Syndrome Association | USA 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.

  ListenShow Notes

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