Empowering Individuals
Supporting Families
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 July 1 – August 15, 2024, PWSA | USA is collecting artwork for Theme #2 in our PWS Rare Aware Art Share! We’re looking for artwork that answers the question:
What's something unique about where you live?
Think about where you live. Look out your window or take a walk in your neighborhood or town. Describe what you see in your art piece. Show us what your world looks like. If you can, include yourself in your artwork. How do you fit into the world you live in?
Prader-Willi Syndrome Association | USA
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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.
Learn about 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
Duxbury, MA 02332
Calling all New Englanders: Join the Gill Family for a full morning of fun activities! The 1st Annual Gavin Gill Classic Golf Tournament – Driving for a Cure, will take place on Saturday, September 7, 2024, at 9:00 a.m. EST at North Hill Country Club (29 Merry Avenue, Duxbury, MA 02332). Enjoy time with family […]
Join PWSA | USA for our September ECHO 4 PWS Webinar, Feeding and Swallowing with Roxann Diez Gross, PhD, CCC/SLP, and Ann Scheimann, MD, MBA. This presentation is designed to enhance the knowledge of the assessment and management of the clinical features of PWS and increase the clinical knowledge of the management of feeding /swallowing […]
Bradenton, FL 34202 United States
Tee off for a great cause at RMC's annual golf tournament, benefiting innovative research and community support initiatives. Enjoy a round of golf while making a positive impact on those living with Prader-Willi Syndrome. When: Monday, September 30, 2024 8:30 a.m. shotgun start Where: Ritz-Carlton Members Golf Club Bradenton, FL Register TODAY at https://www.thermcfoundation.org/golf2024. The […]
Visit our Blog
FDA Accepts Application for New Drug DCCR, Moves to Priority Review
Exciting news for the Prader-Willi syndrome (PWS) community! Soleno Therapeutics has announced that the FDA has accepted their new drug…
Introducing PWS Connect: The New Podcast for the Prader-Willi Syndrome Community
We are excited to announce that PWS Connect, a brand-new podcast from PWSA | USA, is launching on Friday, August…
Survey Results on the Aging Adult with PWS
Contributed by Barb Dorn, RN, BSN As I began my research looking at specific health issues in the aging adult…
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…
Soleno Therapeutics Reports Positive Results from DCCR Study C602 for Prader-Willi Syndrome
Soleno Therapeutics, Inc. has revealed positive outcomes from the randomized withdrawal phase of Study C602, an extended treatment study of…
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.