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
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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Joint Announcement: FPWR Partners with PWSA | USA to Provide BOSS Social Skills Groups for Teens and Adults with PWS
PWSA | USA (Prader-Willi Syndrome Association | USA) and FPWR (Foundation for Prader-Willi Research) are thrilled to announce a groundbreaking collaboration to address the social challenges faced by individuals with Prader-Willi syndrome (PWS). FPWR funding has facilitated the development of the Building Our Social Skills (BOSS) curriculum, a highly effective social skills intervention program created […]
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 DCCR (Diazoxide Choline) Extended-Release tablets for Prader-Willi syndrome (PWS). The results, which showed a significant improvement in hyperphagia-related behaviors in the DCCR group compared to the placebo group, support Soleno’s plan to submit a New […]
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 […]
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.