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.
PWSA | USA's 2026 D.C. Fly-In Application is Now Live!
Join us on Capitol Hill May 4-6, 2026. Click the button below to apply to attend.
New Diagnosis?
Fill a New Diagnosis form to receive our Package of Hope, a Parent’s Guide to Prader-Willi Syndrome.
Click Here
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
When: Tuesday, January 27 @ 8pm ET | 5pm PT Where: ZOOM REGISTER HERE Want to know how we can improve outcomes for more people in our PWS Community? Come join the Colors of Hope group as they present findings from a series of Listening Sessions and surveys with the families of color affected by […]
When: Thursday, January 29, 2026 @ 12 – 1pm ET REGISTER HERE Sleep challenges are a real — and often misunderstood — part of life with Prader-Willi syndrome. Join TREND Community for "Shedding Light on Sleep Disorders in Prader-Willi Syndrome," a webinar centered on caregiver experiences and clinical insight, with a focus on listening, learning, […]
When: Thursday, January 29 @ 7:30 - 9pm ET | 4:30 - 6pm PT REGISTER HERE In 2026, Soleno Therapeutics, the makers of VYKAT XR will be hosting a series of caregiver webinars. Each webinar will have a mini-theme related to important moments in the PWS community. On January 29, the webinar will review the signs […]
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PWSA | USA’s 2025 Research Year in Review
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In Loving Memory of Fausta Deterling, Co-Founder of PWSA | USA
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Give Twice the Good on Giving Tuesday – December 2, 2025!
Giving Tuesday is just around the corner! Mark your calendars for December 2, 2025. This global…
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.