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
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
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 | 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...
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
1997_Vol-XXII-N4-Sept-1997.pdf
Share your PWSA Memory: 50 Year Anniv...
Welcome to another episode in our podcast series, Sibling Advocacy, where we speak with siblings about how they show up for their loved one with PWS, whether at the kitchen table, at school, in friend groups or government, or any place where their sibling may need them.
Today's episode, hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS, is with Joe Gill. Joe is the older brother of Gavin, a...
The latest in PWSA | USA events and PWS news in advocacy, family support, and research.
24-Hour Crisis Line: (941) 312-0400 - Available 24/7, including Holidays.
Preparing for the Holidays Blogs/Resources:
Tips and Techniques for a Safe Holiday Season
Cousins at Christmas: Opening the Conversation of Your Child’s Special Needs
A Letter to Friends and Family
PWSA Memory:
Carrie and Anne spoke with two single caregivers, Annie, mom to Adebu who is 36, and Lon, dad to Max who is 31. Both Adebu and Max are living with PWS.
This conversation dives into some challenging and very real aspects of caring for an adult with PWS. Some of it relates directly to single parents of individuals with PWS, and some of it to the cracks and growing lesions in the support systems for adults with disabilities. This is a...
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
Hope in Action: Adults with PWS Advisory Board Members Share the Importance of Self-Advocacy
PWSA Memory
1993_Vol-XVII-N5-Sept-Oct-1993.pdf
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events | Fundra...
On today’s episode, the PWS United podcast team spoke with two moms, Mandy Kemp, mom to Samantha (5, living with PWS) and Lynn Garrick, mom to John (almost 20, living with PWS). Some of what is discussed will resonate with many families, whether or not you’re a single caregiver, and other points speak directly to issues of being a single caregiver, like carrying the mental load all day every day, isolation, trusting others to care...
The next episode in our podcast series, Sibling Advocacy, where we will be speaking with siblings about how they show up for their loved one with PWS, whether at the kitchen table, at school, in friend groups or government, or any place where their sibling may need them.
Today's episode, led by Dorothea Lantz, PWSA | USA Director of Community Engagement, is with Henry McDonald, the older sibling of Josie (living with PWS).
Henry ...
Ep63 Pulse 133: Nile Hope Workshop and Camp, Department of Education Layoffs, Prader Silly Live Auction
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
Prader-Silly Live Auction
Prader Silly: A Night of Rare Laughs
PWSA Memory
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events | Fundraisers
Link to session material: Emotional Regulation Strategies
This episode is from a session from our International United in Hope PWS Conference and was recorded on June 28, 2025.
”Teaching Emotional Regulation in Individuals with Prader-Willi Syndrome: ABA Strategies for Lasting Success,” was presented by Kasey Bedard, PhD, BCBA-D assistant professor at The Chicago School.
Kasey discusses why emotional regulation is challenging for p...
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
Gala
Tribute Video: Celebrating 50 Years of PWSA | USA!
PWSA | USA's Journey of Hope Gala Photo Gallery
PWSA Memory
1987_Vol-XIII-N4-Jul-Aug-1987.pdf
Share your PWSA Memory: 50 Year Anniversary - Prader-Wil...
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