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.
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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 PWS 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
Savannah, GA 31401 United States
As residential providers and caregivers are integral to the health and well-being of those living with PWS, it is critical they have access to the latest information. PWSA | USA’s 2024 Residential Providers Conference, Empowerment Heroes: Reveal Your Superpowers, will offer a variety of lectures and workshops in a collaborative space where professionals can exchange practice-driven […]
Lakeville, MA 02347 United States
Calling all New Englanders – Join the Lens family for a full afternoon of fun activities! The 15th Annual Hunter Lens Golf Tournament will take place Saturday, October 5, 2024, at 12:00 p.m. EST at the Back Nine Club (17 Heritage Hill Dr., Lakeville, MA 02347). Enjoy time with family and friends while participating in golf, […]
West Orange, NJ 07052 United States
Join us for a day on the links on Friday, October 11, 2024, at Rock Spring Golf Club in West Orange, NJ in remembrance of Jim Worthington. A portion of the proceeds will be donated to the PWSA, in Jim’s name. This event is inclusive for golfers and non-golfers alike – all skill levels are […]
Visit our Blog
Help Needed: Caregivers of Children with Prader-Willi Syndrome and Repetitive Verbal Behavior
Kasey Bedard, PhD, and her team at The Chicago School are seeking caregivers of children diagnosed with Prader-Willi Syndrome (PWS)…
Embracing Differences | The Journey Behind “It Starts With Hello: Katie’s Story About Prader-Willi Syndrome”
Dr. Detiny Pacha, ED.D., is thrilled to have written and published the first children’s book about Prader-Willi syndrome, It Starts…
Fueling Hope: Aardvark Therapeutics’ $85M Boost Powers Breakthrough PWS Treatment
Aardvark Therapeutics has just hit a major milestone with an exciting $85 million Series C financing round! Led by Decheng…
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.