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.
Thank you to those who attended the United in Hope International PWS Conference!
Find a recap of this incredible event at the button below.
Celebrating 50 Years of Support, Advocacy, and Progress
New Diagnosis?
Fill a New Diagnosis form to receive our Package of Hope, a Parent’s Guide to Prader-Willi Syndrome.
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Join our Newsletter
Join our mailing list for Prader-Willi Syndrome Association 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.
Listen Now
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
New Resource
VYKAT™ XR FAQ for Parents and Caregivers
In March 2025, the FDA approved VYKAT™ XR (diazoxide choline), the first-ever treatment for hyperphagia (excessive hunger) in Prader-Willi syndrome. Since then, families and caregivers have had many important questions about this new option.
To help, PWSA | USA, in collaboration with our Clinical & Scientific Advisory Board, has created a comprehensive FAQ document that addresses the most common questions.
Topics covered include:
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Indication / Hyperphagia
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Effectiveness / Monitoring
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Side Effects / Safety
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Interactions / Pharmacology
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Administration / Dosing
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Storage / Pharmacy
Click below to access and download the full FAQ. This resource was developed with support from a grant provided by Soleno Therapeutics. To learn more about VYKAT XR, visit www.vykatxr.com.
PWS Events & Fundraisers
Upcoming Events
St. Louis, MO 63105 United States
50th Anniversary Celebration: Journey of Hope Gala CLICK HERE TO PURCHASE TICKETS Join PWSA | USA as we celebrate 50 years of support, research, and community at our Journey of Hope Gala. Date: Friday, September 26, 2025, from 6 PM - 10 PM Location: Ritz Carlton, St. Louis, MO Together, we will reflect on the […]
Warren, OH 44483 United States
CLICK HERE TO PURCHASE TICKETS AND LEARN MORE Join us for the 2nd annual Dance Silly for Prader-Willi event—a lively celebration to support the Prader-Willi Syndrome Association USA! This special occasion honors our daughter Jayda’s journey with PWS and the invaluable support we’ve received from this incredible organization. Get ready for a FUN, FAMILY, DANCE PARTY like no other! Set […]
Troy, NY United States
CLICK HERE TO PURCHASE TICKETS AND LEARN MORE Join us for an unforgettable evening of support, hope, and community. Hosted at the scenic and historic Brown’s Brewing Company Malt Room, this event will bring together families, friends, and supporters for an inspiring evening of cocktails, conversation, and compassion, all aimed at raising awareness and funds […]
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A Message from Soleno Therapeutics to the PWS Community
Soleno Therapeutics has released a statement to the PWS community regarding VYKAT™ XR (diazoxide choline) extended-release…
Journey of Hope Gala Honoree Spotlight: Merlin Butler, MD, PhD, FFACMG
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize…
Journey of Hope Gala Honoree Spotlight: Jim Kane
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize…
Journey of Hope Gala Honoree Spotlight: Dr. Vanja Holm
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize…
Journey of Hope Gala Honoree Spotlight: Lota Mitchell, MSW
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize…
Journey of Hope Gala Honoree Spotlight: Jim and Joan Gardner
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize…
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.
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.
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.
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.
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.
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.