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.
Episodes
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 PWS mom, Dini Rao, and Marketing and Communications Coordinator and PWS mom Anne Fricke. Wordna and Dhivya bring thoughtful insight, experience, and an impressive array of education and work experience to this conversation on how people’s identifiers, on top of a di...
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
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Occupational Therapy, Parent Perspective - Prader-Willi Syndrome Association | USA
Spotlight on PWS
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 what happens after approval? How do families actually access the therapy? In this episode of PWS United, PWSA | USA CEO Stacy Ward and Director of Development Melanie Zalman sit down with members of the PANTHERx Rare Pharmacy team to answer exactly that.
PANTHERx is...
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
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2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA
Spotlight on PWS
Share Your Story - Prader-Willi Syndrome Association | USA
Resource Spotlight
Understanding Prader Willi Syndrome & Autism
Events | Fundraisers
PWS Roadshow: Events | PWSA-OR-WA.ORG
Our guest today, Julie Casey, mom to Ryan (22, living with PWS), shares her knowledge and experience from homeschooling. The intention of this episode is to shed light on the topic and personal experience of homeschooling with PWS. We offer information so that families in our community, of all configurations (and Julie gets into that), can make informed choices about how their children with PWS are educated. We discuss how to decid...
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
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Spotlight on PWS
PWSA | USA Rare Aware Art Share: Theme #1 Gallery
PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA
Share Your Story - Prader-Willi Syndrome Association | USA
Resource Spotlight
Swallowing in Prader-Willi Syndrome
Events | Fundraisers
In this episode, we introduce PWSA | USA’s newly formed Equity Committee and some of the members. We discuss the importance of an equity committee, who’s been missing from the conversations, data, research, and services, and how involving families from marginalized communities is essential to our organization and our humanity. We talk about health equity, the different dimensions of diversity, how and why to have these difficult co...
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
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Nutrition Discourse in the PWS Community - Prader-Willi Syndrome Association | USA
Nutrition in the PWS Family - Prader-Willi Syndrome Association | USA
Resources: Diet and Nutrition - Prader-Willi Syndrome Association | USA
Spotlight on PWS
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 Dorothea Lantz, PWSA | USA's Director of Community Engagement and mom to Hunter, living with PWS. She spoke with...
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
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National Caregivers Day: The Real Job Description - Prader-Willi Syndrome Association | USA
Spotlight on PWS
"Uncle Dan" Helping to Feed the Community - Prader-Willi Syndrome Association | USA
Share Your Story - Prader-Willi Syndrome Association | USA
Resource Spotlight
In this New Year kickoff episode of PWS United, we're sharing an inside look at what’s in store for PWSA | USA in 2026. After reflecting on the organization’s momentum coming out of its 50th Anniversary year, our podcast co-host Carrie interviews several staff members to ask one simple question: What are you most excited about working on this year?
Listeners will hear highlights about upcoming programs, expanding resources, social ...
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
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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 | Fundra...
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 ...
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 confere...
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
PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA
Spotlight on PWS
Share Your Story - Prader-Willi Syndrome Association | USA
Events | Fundraisers
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 guidel...
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 | ...
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.
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
PWSA Memory
PWSA Library - Prader-Willi Syndrome Association | USA
Events | Fundraisers
Family Zoo Day - Miami - Prader-Willi Syndrome Association | Florida
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 Dorothea Lantz, PWSA | USA's Director of Community Engagement and mom to Hunter, living with PWS. Dorothea spoke...
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