Here's How YOU Can Support PWS Advocacy Efforts
We encourage the PWS community to join PWSA | USA’s 2024 Walk a Mile in their Genes Advocacy Campaign. Participants will not only raise awareness for our rare disease, but needed funds to enable our organization and volunteers to effectively advocate for the unmet needs of our loved ones living with PWS. Get involved and learn more by clicking the button below.
What we do
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)
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.
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
We can continue to make our voices and our stories heard through advocacy and community outreach. Beginning January 16, 2024, YOU can sign up for PWSA | USA’s 2nd annual “Walk a Mile in their Genes” advocacy campaign. Participants will not only raise awareness about PWS, but they will raise much needed funds to enable […]
Between February 1 - March 15, 2024, we are collecting artwork for Theme 1, PWS Awareness. Create your artwork using the prompt: “What is your superpower? What are you capable of?” People with Prader-Willi syndrome are capable of so many wonderful things. We want to know what you, the artist, are most proud of. What […]
2024 Clint Hurdle Hot Stove Dinner Tickets Now Available for Purchase! Join hosts Clint and Karla Hurdle on Saturday, March 23, 2024, on the beautiful grounds of Bradenton Country Club (4646 9th Ave W, Bradenton, FL 34209) in Bradenton, FL, and virtually from anywhere. Together, we can create a brighter future through your continued support! […]
2024 D.C. Fly-In application now available! Soar to new advocacy heights in Washington, D.C.! We are excited to announce the application to attend PWSA | USA’s 2nd D.C. Fly-In, which will take place May 13 – 15, 2024, is now available. Find important disclaimer information by scrolling below, including what expenses PWSA | USA will be […]
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Michael Tan, MS, RD, LDN, is a Dietitian who works with Dr. Jennifer Miller at the University of Florida Health. He spoke at PWSA | USA’s United in Hope Convention in June of 2023 and sees a large number of families in the PWS community. I reached out to Michael with some general questions about […]
contributed by Kristin McKinney My daughter, Mira, is 12 years old and in our local middle school in Colorado. She got a perfect score on a written spelling bee test at her school that allowed her to qualify to participate at the district level. She was only 1 out of 3 students in the whole […]
For Rare Disease Day 2024, PWS mom and PWSA | USA staff member Melanie McDonald wanted to take the opportunity to raise awareness right in her community of Jaffrey, New Hampshire. Melanie’s children, Henry (12) and Josephine (5 w/ PWS), love their town library and saw it as a great place for families to gather […]