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
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...
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
Planned Giving
PWSA Memory
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events
On today’s episode, we welcome Destiny Pacha, Ed.D., the president of EmpowerED Solutions, an organization dedicated to providing educational consulting, IEP advocacy, and support for families and professionals navigating the complex needs of children with Prader-Willi syndrome (PWS) and other genetic disorders in school settings.
Dr. Pacha was a recent speaker at our United in Hope Conference and graciously offered to extend her...
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
Make-A-Will Month
PWSA Memory
On this week’s episode of PWS United, we celebrate the 35th Anniversary of the signing of the Americans with Disabilities Act (ADA). The ADA has been monumental in protecting individuals with disabilities from anti-discrimination legislation and ensuring the legal rights of individuals with disabilities to live, work, and receive services in our society.
In our discussion of the ADA, we dip briefly into the history of the modern di...
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
50th Anniversary
PWSA Memory: Volume33-Number4.pdf
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events
PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign
2025 United in Hope International PWS Conference Recap-General
This episode is a recording from the 2025 United in Hope International PWS conference in Phoenix, AZ. "Endocrine Issues in Teens and Adults" was presented by Dr. Diane Stafford. In this session, Dr. Stafford discusses the issues of growth and pubertal development through the pre-teen and teen years in those with PWS, including the effects of growth hormone therapy and sex steroids. She also discusses the indications for the use of ...
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
United in Hope Conference
United in Hope—and Action: Reflections from the International Prader-Willi Syndrome Conference
2025 United in Hope International PWS Conference - YouTube
PWSA | USA 50th Birthday Party Drone Show
Submit conference testimonials to africke@pwsausa.org or communications@pwsausa.org
50th A...
This episode is a recording from the 2025 United in Hope International PWS conference in Phoenix, AZ. "Nutrition Recommendations for Children and Families with PWS" session was presented by Michael Tan, MS, RD, LDN, CDCES, registered dietitian at the University of Florida. This session is an overview of traditional nutrition recommendations, current recommendations and guidance, and how everyone in the family plays a role.
This is the next episode in our Pioneers in PWS series, a podcast series from PWS United celebrating PWSA | USA's 50th Anniversary!
Before there were conferences, support groups, or even a central source of information on Prader-Willi syndrome, there were pioneers. Parents, professionals, and advocates who built the foundation of the PWS community-one connection, one breakthrough, one act of determination at a time. In honor of PWS...
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