Sobre este podcast
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.
Episodios
Los 20 episodios más recientes de 111
- Ep110: PWS Moms Retreat, We Belong Here · 23 min · Episodio 111October 16 and 17, 100 moms from the PWS community gathered in Park City, UT for our PWSA | USA Moms Retreat. It was a chance to step away, take a breath, and spend time with…
- Physical Therapy Fundamentals for PWS · 53 min · Episodio 110We spoke with two incredible physical therapists and PWS moms for this week's episode. Janice Agarwal and Abigail Ogilbee spoke in depth about the early years of Prader-Willi…
- Ep108: Newborn Screening and Florida's Sunshine Genetics Act · 36 min · Episodio 109Representative Adam Anderson joined the podcast to discuss newborn screening and the Florida Sunshine Genetics Act, Florida’s innovative voluntary research program using…
- Ep107: Belonging, Intimacy, and Sexual Health with PWS · 30 min · Episodio 108Successful and effective conversations on sexual health include discussions on intimacy, belonging, safety, friendships, consent, and so much more. These conversations may feel…
- Ep106: Behavior, Advocacy, Siblings: Celebrating 2 Years of Podcasting · 50 min · Episodio 107PWS United is celebrating 2 years of podcasting! With over 100 episodes, there's a lot to celebrate! This week's episode is a look back at the previous year of episodes (check…
- Ep105: Spreading Love: The Life and Legacy of Karen and Her Family · 38 min · Episodio 106PWSA | USA's Director of Community Development, Melanie Zalman, sat down with caregiver Shelley Smith to shine a light on the lasting impact of thoughtful planning, enduring…
- Ep104: Leave a Lasting Legacy with PWSA | USA (Episode Re-Air) · 29 min · Episodio 105This 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…
- Ep103: PWS Roadshow: Building Community, One Stop at a Time · 22 min · Episodio 104The 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…
- Ep102 Pulse 151: Disability Pride, Podcast Changes, Voices on VYKAT 6 · 54 min · Episodio 103The 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…
- Ep101: Transitioning PWS to Adulthood · 54 min · Episodio 102PWS 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…
- Ep100 Pulse150: 100 Episodes, Convention, State Specific Events · 30 min · Episodio 101The 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…
- Ep99: Navigating School Transitions, Trainings, Non-Negotiables, and More with Destiny Pacha · 1 h 8 min · Episodio 100This episode is loaded with important information for your school-aged loved one with PWS. Destiny Pacha, PWS education specialist and IEP consultant, gathered questions from…
- Ep98 Pulse 149: Events for Moms and Dads, Convention Registration, VYKAT Testimonial · 42 min · Episodio 99The 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…
- Ep97 Father's Day Special: Two PWS Dads, Two Events, One Powerful Mission · 41 min · Episodio 98Father's Day is almost here (June 21), and we're celebrating with two incredible dads from the PWS community. PWSA | USA's Director of Development Melanie Zalman and Fundraising…
- Ep96 Pulse 148: Preparing for Summer, Awareness Month Gratitude, Getting Involved in Research · 29 min · Episodio 97The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Pulse Header Enjoy Summer with this List of Fun…
- Ep95 Garrick Siblings: Importance of Community and Listening · 36 min · Episodio 96We’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…
- Ep94 Advocacy is Everything: 2026 DC Fly-In Recap · 43 min · Episodio 95PWS advocates had an incredible experience in Washington, D.C., this past May 4-6. From policy deep dives and meetings with congressional representatives, to cocktail meetups and…
- Ep93 Pulse 147: PWS Awareness Day, D.C. Fly-In Recap, Voices on VYKAT 5 · 48 min · Episodio 94The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Pulse Header The Importance of PWS Awareness Day - PWSA…
- Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues · 49 min · Episodio 93For this episode we brought in Lynn Garrick, PWSA | USA's Medical and Research Coordinator, mom to John (living with PWS, and the woman behind Ask Nurse Lynn to talk about…
- Ep91 PWS Awareness Month is Here: How to Get Involved · 52 min · Episodio 92Another PWS Awareness Month (May 1-31) has arrived and we're excited to continue spreading awareness, information, and support for our loved ones with PWS! In this episode, PWSA…
