Empowering Individuals
Supporting Families
Here's How YOU Can Support PWS Advocacy Efforts
We encourage the PWS community to join PWSA | USA’s 2024 Walk a Mile in their Genes Advocacy Campaign. Participants will not only raise awareness for our rare disease, but needed funds to enable our organization and volunteers to effectively advocate for the unmet needs of our loved ones living with PWS. Get involved and learn more by clicking the button below.
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What we do
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)
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.
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.
Events & Fundraisers
Upcoming Events
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 […]
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 […]
Warren, OH 44483 United States
Hosted by PWS Mom Michele Hampton Join us for the inaugural Dance Silly for Prader-Willi event—a lively celebration to support the Prader-Willi Syndrome Association USA! This special occasion honors our daughter Jayda’s journey with PWS and the invaluable support we've received from this incredible organization. Get ready for a FUN, FAMILY, DANCE PARTY like no […]
St. Louis, MO 63121 United States
Hosted by PWS Mom Michelle Spring Please join us at the 4th Annual (Trivia) Answers for Audrey event on Saturday, October 12th, 2024 at the Incarnate Word Academy (2788 Normandy Dr, Bel-Nor, MO, United States, Missouri)! Doors open at 6:30 pm and trivia starts at 7:00 pm. Our daughter, Audrey Rose, was diagnosed with Prader-Willi […]
Visit our Blog
PWSA | USA’s Podcast has a New Name!
As part of our ongoing efforts to best serve the Prader-Willi syndrome community, we are introducing a new name for our podcast. Moving forward, PWSA | USA’s podcast will be known as PWS United! This change is based on valuable feedback we’ve received from the community. Some members are sharing there is occasional confusion between […]
Spotlight on Hope: Climbing (Another) Mountain
contributed by Anne Fricke Last year around this time, Freya climbed Mount Lassen (a 10,000+ foot volcano in Northern California). This year, her class went on another adventure, a backpacking trip to Mount Eddy. The mountain was a little smaller, but the camping trip was more challenging. Freya handled it all like a champ! This […]
FDA Advisory Committee to Review DCCR as Treatment for Hyperphagia in PWS
The FDA has announced its plan to conduct an Advisory Committee Meeting as part of its review of Soleno Therapeutics’ DCCR New Drug Application. The FDA convenes Advisory Committees to provide independent expert advice that contributes to the agency’s regulatory decision-making. As part of the Advisory Committee Meeting, interested community members are encouraged to share […]
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.