PWS United

Ep107: Belonging, Intimacy, and Sexual Health with PWS

Successful and effective conversations on sexual health include discussions on intimacy, belonging, safety, friendships, consent, and so much more. These conversations ma

Ep106: Behavior, Advocacy, Siblings: Celebrating 2 Years of Podcasting

PWS 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 (

Ep105: Spreading Love: The Life and Legacy of Karen and Her Family

PWSA | 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, endur

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

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 reso

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

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

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

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 A

Ep101: Transitioning PWS to Adulthood

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 t

Ep100 Pulse150: 100 Episodes, Convention, State Specific Events

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

Ep99: Navigating School Transitions, Trainings, Non-Negotiables, and More with Destiny Pacha

This episode is loaded with important information for your school-aged loved one with PWS. Destiny Pacha, PWS education specialist and IEP consultant, gathered questions

Ep98 Pulse 149: Events for Moms and Dads, Convention Registration, VYKAT Testimonial

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

Ep97 Father's Day Special: Two PWS Dads, Two Events, One Powerful Mission

Father'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 Fund

Ep96 Pulse 148: Preparing for Summer, Awareness Month Gratitude, Getting Involved in Research

The 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

Ep95 Garrick Siblings: Importance of Community and Listening

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 P

Ep94 Advocacy is Everything: 2026 DC Fly-In Recap

PWS 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 mee

Ep93 Pulse 147: PWS Awareness Day, D.C. Fly-In Recap, Voices on VYKAT 5

The 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 Aware

Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues

For 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 abou

Ep91 PWS Awareness Month is Here: How to Get Involved

Another 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 episod

Ep90 Staying Curious: Continuing the Equity Conversation

Today’s episode features two more members of our new equity committee, Wordna Meskheniten and Dhivya Venkataraman, along with PWSA CEO Stacy Ward, PWSA Board Member and P

Ep89 Pulse 145: PWS Awareness Month, DC Fly-In, Voices on VYKAT 4, Autism Blog

The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400   Pulse Header  Celebrating Occupational Th

Ep88: What is a Rare Pharmacy? How PWS Families Receive Care Through PANTHERx

One year ago, on March 26, 2025, the PWS community reached a landmark milestone with the FDA approval of VYKAT XR - the first-ever treatment for hyperphagia in PWS. But w