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.
The 2024 Angel Drive is PWSA | USA’s largest annual fundraising campaign, dedicated to bringing hope and essential support to families and individuals impacted by Prader-Willi syndrome. This year, the Angel Drive not only supports our life-changing programs—like school advocacy, medical crisis support, and caregiver resources—but also marks the beginning of our 50th anniversary celebration. Your donations directly fuel our mission, helping families access vital services, empowering individuals, and fostering a connected and resilient PWS community.
Join us in giving the gift of hope by December 31st, and if you contribute by December 15th, you’ll be entered for a chance to win one of four exciting prizes. Together, let’s ensure that PWSA | USA is here to support families for another 50 years and beyond.
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 – December 1, 2024, 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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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
CLICK HERE TO MAKE YOUR GIFT OF HOPE! As we approach the end of 2024, we are filled with gratitude for your unwavering support. This year has been a time of innovation and growth for the Prader-Willi Syndrome Association | USA (PWSA | USA), and it’s all thanks to your engagement and generosity Sharing and […]
PWSA | USA is pleased to announce a new partnership with the Foundation for Prader-Willi Research (FPWR) and the International Prader-Willi Syndrome Organisation (IPWSO) to host United in Hope – an International PWS Conference to be held June 24-28, 2025 at the Arizona Grand Resort and Spa in Phoenix, Arizona! The conference theme, “United in Hope” reflects […]
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The (Sometimes Messy) Details of Life in a Clinical Trial
contributed by Anne Fricke, mom to Freya (13, living with Prader-Willi Syndrome) Freya’s third and fourth appointments for the Harmony…
Letter to Community on FDA’s Extension of DCCR Review
Dear PWS Families, We understand that hearing about the FDA’s extension of the review period for DCCR (diazoxide choline controlled…
FDA Extends Review Period for DCCR: What It Means for the PWS Community
On Tuesday, November 26, 2024, Soleno Therapeutics shared an important development regarding the New Drug Application (NDA) for DCCR (diazoxide…
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.