Prader-Willi Syndrome Association | USA
Empowering Individuals, Supporting Families
Listen to the 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. You can also click the button below to find episodes on Podbean.
Registration is now OPEN for the 2025 International PWS Conference. Join PWSA | USA, IPWSO, and FPWR June 24-28, 2025, in Phoenix, Arizona!
Registration is now open for the 2025 International Prader-Willi Syndrome Conference in Phoenix Arizona! Prader-Willi Syndrome Association USA, FPWR and IPWSO are coming together to bring you the most up-to-date medical information, help and HOPE for parents and caregivers, a safe and fun space for your loved ones with PWS and their siblings, and a time to connect with other families. Space at the camps is limited; once they are full, we will close registration. Mark your calendars and register early! Find additional details and the Conference and Camps registration form at the button below.
Between October 1, 2024 – January 31, 2025, PWSA | USA is collecting artwork for Theme #3 in our PWS Rare Aware Art Share! We’re looking for artwork that answers the question:
What's your favorite birthday memory?
Birthdays are often joyful celebrations in our lives. As PWSA | USA celebrates our 50th Anniversary/Birthday in 2025, we want to know what happy birthday memories you have. Was there a birthday when you got to go on a fun adventure or had a very special person celebrate with you? Are your favorite birthday celebrations with family and friends? Have you traveled for a birthday? Think of a birthday that you have had that made you very happy and use your art to tell us about it.
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). By joining, you’ll share your experiences, contribute to groundbreaking research, and help researchers understand the challenges faced by those with PWS. Your insights and participation will directly support the mission to improve the lives of the PWS community. All personal information will be de-identified for privacy, ensuring your data is protected.
Prader-Willi Syndrome Association | USA
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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 mailing list for Prader-Willi Syndrome Association updates and other relevant information.
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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. Since 2000, growth hormone therapy (GH) has revolutionized the standard of care for individuals with Prader-Willi syndrome, offering life-changing benefits. From improved height, muscle tone, and bone strength to enhanced cognitive function and energy levels, this treatment is essential for addressing the unique challenges of PWS.
This booklet delves into the history of growth hormone therapy, the pioneering researchers who advanced its use, and the evidence-based guidelines that have established it as the only FDA-approved treatment for PWS. Equip yourself with the knowledge to make informed decisions and provide the best possible care for individuals with PWS.
What we do
PWS Advocacy & Awareness
Increasing awareness and effectively advocating for Prader-Willi syndrome at the state and federal level is a critical component of our mission. We seek to involve all members of our community and work to keep you informed on the best ways to affect change.
What is Prader-Willi Syndrome? (PWS)
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. We also provide education to medical providers, schools, and professional care givers through ongoing trainings, toolkits and other valuable resources. We support the family from the NICU through all stages of the PWS journey.
Prader-Willi Syndrome Research
PWSA | USA seeks to support research projects with the potential for immediate and high impact for the Prader-Willi Syndrome community. The goal is to fast-track better treatment for the syndrome, and we proudly collaborate with partners representing pharmaceutical companies, research universities, and more to achieve that goal.
PWS Events & Fundraisers
Upcoming Events
Springfield, IL 62707 United States
When: Saturday, February 1, 2025 | 5:30 pm Where: Poe's on the Hill, Springfield, IL CLICK HERE TO PURCHASE TICKETS Join Team Esme for an Unforgettable Evening of Fun and Fundraising! Get ready for a night of delicious food, lively dancing, and exciting entertainment. DJ Chad Burton will keep the energy high throughout the evening. […]
Bradenton, Florida 34209
Sip, Savor, Support! Join Clint and Karla Hurdle on Saturday, March 22, 2025, to support PWSA | USA. Enjoy the 11th Annual Hot Stove Dinner at this outdoor event on the beautiful grounds of Bradenton Country Club, Bradenton, FL, or virtually from anywhere. REGISTER HERE! Event Schedule: 5:00 PM EST - 6:00 PM EST | […]
Bedford, NY 10506 United States
When: Saturday, April 5, 2025 | 6:00 PM Where: Historical Hall (608 Old Post Road, Bedford NY) CLICK HERE TO REGISTER AND BECOME AN EVENT SPONSOR Join us for the inaugural Zahra’s Night of Light at the Historic Hall in Bedford, NY! This community event brings us together to support children like Zahra, living with Prader-Willi Syndrome. […]
Visit our Blog
Spotlight on Hope: Overcoming What Feels Impossible
contributed by Sheri Mills Potty training…It’s a big milestone, and one that is hard for our kids. We started at…
Trial Transitions and Testimonials
A month ago, Freya transitioned from the 77-day double-blind portion of the Pitolisant trial to the open-label extension, which will…
Spotlight on Hope: Lenny’s Business Fair Breakthrough
contributed by Cocoa Ma (Mom to Lenny, a 12-year-old living with PWS) Lenny has been passionate about art since he…
Lifestyle Practices to Manage Gastroparesis
The lifestyle aspect of managing gastroparesis is often overlooked or underestimated. Some people think it is too simple a…
Creating a Parent Input Statement for Your Child’s IEP
Contributed by PWSA | USA’s Director of Family Support Stacy Ward, MS As a parent, you know your child best…
How To Travel with Refrigerated Medication
Contributed by Anne Fricke There was a time when we thought the refrigeration needs of Freya’s growth hormone alone would hinder…
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.