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
REGISTER IN ADVANCE HERE Presenters: Lynn Garrick, RN, MSN, PWSA l USA Medical and Research Coordinator, Barb Dorn, RN BSN, PWSA l USA Volunteer Overview: This webinar will highlight current research in the area of aging and PWS. It will also identify the most common health issues being reported by parents, guardians and caregivers. The […]
REGISTER IN ADVANCE HERE Presenters: Barb Dorn, RN BSN, PWSA l USA Volunteer Overview: This webinar will continue discussion on commonly reported health issues by sharing risk factors, screening and monitoring tools as well as prevention and management strategies for additional health topics – respiratory issues, weight gain/obesity, low bone density, cardiac issues (high BP, […]
Join PWSA | USA for our August ECHO 4 PWS Webinar, Cardiac Concerns with Dr. James Loker. On August 15, 2024, at 5:00 p.m. EST, Dr. Loker will discuss Cardiac disease, which accounts for 16% of all deaths in PWS. He will share the unique features of PWS that may predispose them to cardiovascular problems. […]
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 […]
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 […]
Visit our Blog
Growing up Rare
contributed by Justice Rickenbach My name is Justice Faith, and I am 20 years old. I have: Prader-Willi syndrome Narcolepsy with cataplexy Scoliosis Gastroparesis and Central adrenal insufficiency I have been dealing with many health issues my whole life. Because of my rare conditions, I have many fears. I worry about my health, friends, and, […]
PWS Aging Research and Health Update Webinar Series: Comprehensive Insights and Strategies for Caregivers
Join us for the PWS – Aging Research and Health Update Webinar series, featuring Lynn Garrick, RN, MSN, and Barb Dorn, RN, BSN. Part 1, on Tuesday, July 30, 2024, at 8:00 p.m. EST, will highlight current research on aging in PWS and common health issues reported by caregivers. The speakers will cover risk factors, […]
Soleno Therapeutics Submits New Drug Application to FDA for PWS Treatment
On June 28, 2024, Soleno Therapeutics announced the company officially submitted a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for DCCR (diazoxide choline) extended-release tablets. This new treatment targets Prader-Willi syndrome (PWS) in individuals aged 4 and older with hyperphagia. CEO Anish Bhatnagar, M.D., says, “Submission of the DCCR NDA to […]
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.