Prader-Willi Syndrome Association | USA
Empowering Individuals, Supporting Families
PWSA | USA's 24-Hour Crisis Phone Line: (941) 312-0400
PWSA | USA’s 24-Hour Crisis Line provides immediate, expert support to families facing medical or behavioral emergencies, ensuring you are never alone during critical moments. Available 24 hours a day, every day of the year (including holidays), our knowledgeable Family Support Team is always on the other end of the line, ready to listen and help. You can also email our team at info@pwsausa.org.
PWS Advocacy & Awareness
PWS Family Support
PWSA | USA’ Family Support team provides individuals diagnosed with Prader-Willi syndrome, their families, and care providers with critical information and resources on PWS.
PWS Research
PWSA | USA seeks to support research projects with the potential for immediate and high impact for the Prader-Willi Syndrome community.
Registration for the 2027 United in Hope National PWS Convention is NOW OPEN!
We’re excited to invite you to the 2027 (39th) United in Hope National PWS Convention, one of the largest and most meaningful gatherings for the Prader-Willi syndrome community.
Join us July 14-17, 2027, at the beautiful Caribe Royale Orlando in Orlando, FL, where we’re expecting hundreds of attendees from across the U.S. and around the world. This is an incredible opportunity to connect, learn, and celebrate the strength of our community.
Click the button below to learn more and to register.
PWSA | USA's 2026 Residential Providers Conference Registration is Now Open!
Residential providers are invited to join us August 21-22, 2026, at the The Kimpton Brice Hotel in Savannah, GA. Click the button below to register and learn more.
New Diagnosis?
Fill out a New Diagnosis form to receive our Package of Hope, a Parent’s Guide to Prader-Willi Syndrome.
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Join our mailing list for PWSA | USA updates and other relevant information.
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PWS United Podcast
A podcast produced by PWSA | USA for the Prader-Willi syndrome community! Find PWS United on Apple Podcasts, Spotify, or anywhere you listen to podcasts.
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Join the PWS Connect Community & Research Initiative
Become a part of the PWS Connect Community to help accelerate scientific progress for people living with Prader-Willi syndrome (PWS).
Join the Initiative Today!
Discover the Vital Role of Growth Hormone in PWS Care
Explore PWSA | USA’s comprehensive Growth Hormone Booklet, a critical resource for families, doctors, and healthcare professionals.
Growth Hormone Booklet
PWS Events & Fundraisers
Upcoming Events
Hosted by the Prader-Willi Syndrome Association of Oregon & Washington All PWS families, physicians, and nurses are welcome to attend a PWS Roadshow event! You'll have the opportunity to meet with other local families, ask the expert panel and connect with PWS professionals in your area, find out about new and potential future treatments for […]
1503 Government St
Baton Rouge, LA 70802 United States
Join host Katie Martinez, mom to Samuel (9, living with PWS) for a fun, high-energy night of music, dancing, and great memories as we move through different decades of music — spending time with friends, family, and community, letting loose, and being part of something meaningful. When: Wednesday, July 15, 2026 | Doors open at […]
30 Rainbow Rd
Albuquerque, NM 87113 United States
A Retreat for Dads of Children Living with Prader-Willi Syndrome When: Friday, July 24 - Sunday, July 26, 2026 Where: Sandia Resort and Casino | Albuquerque, New Mexico CLICK HERE TO LEARN MORE & REGISTER TO ATTEND DADventure is a father-led, independently organized retreat created by Jonathan Andrews and Matt Rivard. This event is a […]
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NEW PWS Resource Available: Understanding Constipation in PWS
We’re excited to share a new family-friendly guide, “Understanding Constipation in Prader-Willi Syndrome.” Did you know…
Registration Is Open: Join Us at the 2027 United in Hope National PWS Convention
We are thrilled to officially kick off registration for PWSA | USA’s 39th United in Hope…
Voices That Move Policy: Recapping PWSA | USA’s 2026 D.C. Fly-In
Every two years, individuals living with Prader-Willi syndrome (PWS), their family members, and supporters do something…
Update: Neurocrine Biosciences Completes Acquisition of Soleno Therapeutics
On April 6, 2026, PWSA | USA received news that Soleno Therapeutics had agreed to be…
NEW PWS Resource Available: Respiratory Concerns in PWS
We’re excited to share a new family-friendly guide: “Respiratory (Breathing) Concerns in Prader-Willi Syndrome.” Did you know…
Soleno Therapeutics to Be Acquired by Neurocrine Biosciences: What This Means for the PWS Community
On Monday, April 6, 2026, PWSA | USA received a letter from our partners at Soleno…
Giving HOPECreating IMPACT
Be a part of something great. We are utterly dedicated to giving hope to those in need, creating a lasting impact for them.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.