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 […]
PWSA | USA is pleased to announce a new partnership with the Foundation for Prader-Willi Research (FPWR) and the International Prader-Willi Syndrome Organisation (IPWSO) to host United in Hope – an International PWS Conference to be held June 24-28, 2025 at the Arizona Grand Resort and Spa in Phoenix, Arizona! The conference theme, “United in Hope” reflects […]
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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…
The PWS Voice of the Patient Report has Been Filed with the FDA!
On May 1, 2024, the first day of PWS Awareness Month, the Voice of the Patient Report was officially filed…
Request for Prader-Willi Syndrome Research and Mini-Fellowship Grant Applications
PWSA | USA is currently seeking research project applications with direct impacts on individuals and families affected by PWS. We…
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…