Empowering Individuals
Supporting Families
PWS Healthcare Providers! Register for PWSA | USA's ECHO 4 PWS - Endocrinology 101
PWS Healthcare Providers are invited to attend PWSA | USA’s next ECHO 4 PWS webinar, Endocrinology 101, which will be held Tuesday, September 26, 2023 at 6:00 p.m. EST. We are proud to offer this FREE opportunity to healthcare professionals who work with patients affected by PWS or are interested in learning more about PWS. Endocrinology 101 will be presented by Jennifer Miller, MD, Professor of Pediatric Endocrinology, Gainesville, FL, followed by a 20–minute case study on PWS presented by Moris Angulo, MD, Pediatrics, Genetics, and Pediatric Endocrinology, Catholic Health Physician Partners.
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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 for our loved ones.
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 TODAY for PWSA | USA's next Healthcare Provider Project ECHO Series webinar, Endocrinology 101, which will be held Tuesday, September 26, 2023 at 6:00 p.m. EST. We are proud to offer this FREE opportunity to healthcare professionals who work with patients affected by Prader-Willi syndrome (PWS) or are interested in learning more about PWS, and to […]
West Orange, NJ 07052 United States
2ND ANNUAL NO GIMMES FOR JIMMY CHARITY GOLF OUTING OCTOBER 6, 2023- 8AM CHECK-IN, 9AM SHOT-GUN START NO GIMMES FOR JIMMY 2ND ANNUAL CHARITY GOLF OUTING IN LOVING MEMORY OF JIM WORTHINGTON A PWSA EVENT IN SUPPORT OF PRADER-WILLI SYNDROME JOIN US FOR A DAY ON THE LINKS IN REMEMBRANCE OF JIM WORTHINGTON. A PORTION […]
Lakeville, MA 02347 United States
14TH ANNUAL HUNTER LENS GOLF TOURNAMENT OCTOBER 7, 2023 THE BACK NINE CLUB 17 HERITAGE HILL DR, LAKEVILLE, MA 02347 About Hunter Hunter is 24 years old and has Prader-Willi syndrome. He leads a happy, active life despite his daily challenges. He has friends, a loving family and his weight is under control. Supporting PWSA […]
When: October 12-15, 2023 Where: Palm Springs, California PWSA | USA is excited to host our first-ever Mom's Retreat in October 2023. We will welcome 30 PWS moms and full-time female caregivers to the Omni Rancho Las Palmas Resort & Spa in Palm Springs, CA. The Moms' Retreat application is now available and is due […]
St. Louis, MO 63121 United States
What: (Trivia) Answers for Audrey Where: Incarnate Word Academy 2788 Normandy Avenue St. Louis, MO 63121 When: Saturday October 21, 2023 CLICK HERE TO LEARN MORE
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Neuren Pharmaceuticals is Happy to Announce the First Site Participating in Their Phase II, Open Label, PWS Study (Neu-2591-PWS-001) is Now Open for Screening!
Important information regarding this exciting milestone: Rare Disease Research (RDR), located in Atlanta, GA, is now welcoming children with PWS and their families to their clinicfor screening into this trial. The duration of active treatment in this study is 13 weeks. In a preclinical study in animals, physiological and behavioral symptoms were normalized within six […]
Harmony Biosciences Issues Statement Regarding Confidence in Pitolisant Drug
Harmony Biosciences has reaffirmed its confidence in the strength of WAKIX® (Pitolisant) patents, after receiving a positive ruling from the U.S. Patent and Trademark Office (USPTO) rejecting the request for reexamination. WAKIX® is used to treat excessive daytime sleepiness (EDS) or cataplexy in adults with Narcolepsy. Read Harmony Biosciences’ community-facing statement below: We are pleased […]
2023 Moms’ Retreat Attendees Selected!
Thank you to everyone who submitted an application to attend PWSA | USA’s first-ever Moms’ Retreat, October 12-15, 2023, in Palm Spring, California! On Friday, August 18, 2023, 30 applicants were randomly selected to attend the event. Our staff will be reaching out to these individuals to provide additional details and collect information. Below you […]
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.