PWS United
PWS United
PWSA | USA
Ep52 Pulse 128: Make-A-Will Month, Big Advocacy Win, Dance Silly for Prader-Willi, BOSS Program Update, Harmony Biosciences Webinar
36 minutes Posted Aug 5, 2025 at 4:21 pm.
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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 
Your PWS Story Matters—And the Legacy You Leave Can Echo Far into the Future - Prader-Willi Syndrome Association | USA 
Planned Giving | PWSA USA 
PWSA Memory 
PWSA Memory: PWSA Conference Held with Prader-Willi California Foundation in 1999 - Prader-Willi Syndrome Association | USA 
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA 
Events  
PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign 
Fundraisers 
2nd Annual Dance Silly for Prader-Willi - Prader-Willi Syndrome Association | USA 
Contact email: [email protected]
16th Annual Hunter Lens Golf Tournament - Prader-Willi Syndrome Association | USA
PWSA Fundraising Pages - Campaign 
Spotlight on Hope 
Volunteer Spotlight: Melissa Rivas - Spreading Joy, Creativity, and Hope - Prader-Willi Syndrome Association | USA 
Share Your Story - Prader-Willi Syndrome Association | USA 
Advocacy 
Exciting News! PWS Included in FY26 Department of Defense Appropriations Bill for Medical Research
Medicaid-Fact-Sheet-1.pdf 
Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA 
Family Support 
Understanding Gastric Motility and Gastroparesis in PWS - Prader-Willi Syndrome Association | USA 
Building Our Social Skills (BOSS) Program Begins Again - Prader-Willi Syndrome Association | USA  
Ask Nurse Lynn: Leptin and Hyperphagia
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA  
Research 
Harmony Biosciences TEMPO Trial Webinar: Webinar Registration - Zoom 
Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA 
www.heroforpws.com 
Announcements/Resource Spotlight 
Qualifying for Social Security Disability with PWS 
 
Intro Music: https://www.bensound.com/; License certificate #2242442