Prader-Willi Syndrome Association | USA
Empowering Individuals, Supporting Families
PWS Advocacy & Awareness
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.
PWS Research
PWSA | USA seeks to support research projects with the potential for immediate and high impact for the Prader-Willi Syndrome community.
Registration is now OPEN for the 2025 International PWS Conference.
Join PWSA | USA, IPWSO, and FPWR June 24-28, 2025, in Phoenix, Arizona!
Celebrating 50 Years of Support, Advocacy, and Progress
New Diagnosis?
Fill a New Diagnosis form to receive our Package of Hope, a Parent’s Guide to Prader-Willi Syndrome.
Click Here
Join our Newsletter
Join our mailing list for Prader-Willi Syndrome Association updates and other relevant information.
Sign Up
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.
Listen Now
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).
Join the Initiative Today!
Discover the Vital Role of Growth Hormone in PWS Care
Explore PWSA | USA’s comprehensive Growth Hormone Booklet, a critical resource for families, doctors, and healthcare professionals.
Growth Hormone Booklet
PWS Events & Fundraisers
Upcoming Events
Bedford, NY 10506 United States
When: Saturday, April 5, 2025 | 6:00 PM Where: Historical Hall (608 Old Post Road, Bedford NY) CLICK HERE TO REGISTER AND BECOME AN EVENT SPONSOR Join us for the inaugural Zahra’s Night of Light at the Historic Hall in Bedford, NY! This community event brings us together to support children like Zahra, living with Prader-Willi Syndrome. […]
CLICK HERE TO REGISTER Join PWSA | USA, The Endocrine Society, and Medscape Education for this live symposium on Prader Willi syndrome (PWS) where experts will explore the huge burden that hyperphagia represents for patients with PWS, their families, and their caregivers. They will delve into the pathophysiology and complications of hyperphagia and look to […]
We are excited to introduce the United We Brunch initiative, a nationwide effort designed to bring people together to connect, share experiences, gain the resources, and support our community needs. United We Brunch is about fostering hope – one brunch, one state, and one family at a time – uniting communities and creating a ripple effect of awareness and […]
Visit Our Blog
IVF Miracle
submitted by Melissa Karzazi, mom to Samir So… let me tell you about my little IVF…
PWS Breaking News! FDA Approves First-Ever Treatment for Hyperphagia in PWS
We are thrilled to share with you this BREAKING NEWS for the PWS Community! The U.S. Food…
Spotlight on Hope: Blessed by Micah’s Life
submitted by Ashley Hendrickson, mom to Micah (living with PWS) By the grace of God, Micah…
New for PWS Awareness Month: Host a United We Brunch!
May is Prader-Willi Syndrome (PWS) Awareness Month—a time to amplify voices, celebrate resilience, and rally support…
TREND Report: Gastrointestinal Issues in the PWS Community
TREND Community released its latest report on Gastrointestinal Issue in the PWS Community. This report expresses…
New Project Seeks to Identify Characteristics that Predict Challenging Behaviors in PWS
Individuals with PWS often exhibit rigidity, obsessive-compulsive tendencies, emotional outbursts, as well as unusual thoughts and…
Giving HOPECreating IMPACT
Be a part of something great. We are utterly dedicated to giving hope to those in need, creating a lasting impact for them.
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.