Empowering Individuals
Supporting Families
Here is YOUR Opportunity to Support PWSA | USA's Family Support Programs and Services
From those first days in the NICU, finding specialists and deciphering insurance claims, to sending your child off to school, navigating independence and adulthood, and the growing experiences of PWS in the later years of life, we are available every step of the way. We offer personal family support through our mentoring program, assistance with the IEP process as well as SSI and SSDI claims, trainings for schools and residential providers, connections and information on PWS specific providers, informative webinars, community-engaging conferences, a blog that focuses on the variety of PWS experiences, and a 24-hour crisis hotline. We are honored to be here for your family and the rest of the PWS community. Between April 1 – May 31, we will be accepting donations for our Family Support Campaign. Please consider making a gift so we can continue to be a source of Help and Hope to our community.
May is Prader-Willi Syndrome (PWS) Awareness Month!
The month of May is an important time for our rare disease community because it’s recognized as Prader-Willi Syndrome Awareness Month. While advocacy efforts, the fight for research advancements, and celebration of our loved ones is important 365 days a year, the 31 days in May offer an opportunity to really show off our PWS pride. Throughout this email, we share several different ways YOU can make an impact!
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What we do
PWS 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)
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.
Prader-Willi Syndrome 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.
PWS Events & Fundraisers
Upcoming Events
150 PWS Advocates will descend on Capitol Hill during National PWS Awareness Day for PWSA | USA's 2nd D.C. Fly-In! PWSA | USA is excited to announce that our 2nd D.C. Fly-In will take place May 13-15, 2024, and the event hotel will be YOTEL Washington DC | Capitol Hill Hotel (415 New Jersey Ave NW, Washington, DC 20001)! During […]
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 […]
Warren, OH 44483 United States
Dance Silly for Prader-Willi is our 1st annual event to raise money for the Prader-Willi Syndrome Association USA . Since our daughter Jayda was diagnosed with PWS, this association has provided us with so many resources, connections, and supportive individuals to walk alongside us in our journey. The Dance Silly for Prader-Willi event will be […]
Visit our Blog
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Aardvark Therapeutics has just hit a major milestone with an exciting $85 million Series C financing round! Led by Decheng…
Rare Disease Advocates Will Unite in Washington, D.C., to Celebrate National Prader-Willi Syndrome (PWS) Awareness Month, National PWS Awareness Day
May 8, 2024 (Washington, D.C.) — Prepare for a powerful convergence in the heart of Washington, D.C., on May 15th…
Preserving Progress: Stand Up for Fully Funding the BRAIN Initiative!
The NIH-BRAIN Initiative (Brain Research Through Advancing Innovative Neurotechnologies – Initiative), is a partnership between the National Institutes of Health…
Lifestyle Practices to Manage Gastroparesis
The lifestyle aspect of managing gastroparesis is often overlooked or underestimated. Some people think it is too simple a…
Creating a Parent Input Statement for Your Child’s IEP
Contributed by PWSA | USA’s Director of Family Support Stacy Ward, MS As a parent, you know your child best…
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…
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.