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
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...
We are beginning a new 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 Elaine Towle, PWSA | USA Advocacy Specialist and mom to Jim (39, living with PWS), is with Rockie Penta. Rockie is the younger sibling of V...
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
Gala Live Auction
PWSA | USA's 50th Anniversary: Journey of Hope Gala AUCTION
50th-Gala-How-to-Bid-on-the-Silent-Auction.pdf
PWSA Memory
1982_Vol-VIII-N5-Sept-Oct-1982.pdf
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events
Direct Support Professionals are a critical aspect to the lives of our loved ones living with Prader-Willi syndrome. They provide more than day-to-day supervision, they ensure dignity, safety, independence, and opportunity for those they support. From carefully managing food security, to navigating challenging behaviors, to offering encouragement and joy in daily activities, DSPs make an extraordinary difference every single day.
T...
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
Direct Support Professionals Week
In Recognition of Direct Support Professionals - Prader-Willi Syndrome Association | USA
PWSA Memory
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syn...
PWS United podcast just turned 1! We decided to celebrate with a look back at our top 10 episodes from this past year. From nutrition advice to sibling support, adults with PWS and advocacy work, the BIPOC community and Nurse Lynn submissions, Carrie and Anne share some clips to celebrate this growing library of information and support and inspire new listeners to take advantage of this incredible resource for the PWS community. Sh...
August is National Make-A-Will Month, and in this special bonus episode of PWS United, we’re shining a light on the importance of planning ahead - both for our families and for the future of PWSA | USA. This milestone year marks PWSA’s 50th anniversary, offering a meaningful opportunity to reflect on the legacy we want to leave for the Prader-Willi syndrome community.
Host Carrie Ilijevich is joined by Melanie Zalman, PWSA’s Direct...
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