May 8, 2024 (Washington, D.C.) — Prepare for a powerful convergence in the heart of Washington, D.C., on May 15th as advocates for individuals living with Prader-Willi syndrome (PWS) gather for PWSA | USA’s important advocacy event, the D.C. Fly-In. This year marks the 2nd National PWS Awareness Day, a significant milestone achieved through the...
Category: Advocacy
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 with the FDA! This timely filing marks a significant moment for the Prader-Willi syndrome community. The report gives crucial insights that amplify the perspective of individuals and families affected by PWS and sheds light on...
Calling All PWS Community Members: Sign the FDA Petition
Attention everyone in the Prader-Willi syndrome (PWS) community and beyond! We need your support NOW! We are rallying behind a critical petition urging the FDA to take action on DCCR (diazoxide choline) for individuals living with PWS. Soleno Therapeutics’ investigational drug has shown remarkable promise in improving hyperphagia, reducing fat mass, and addressing challenging PWS-associated...
Ripple Effect: Advocacy in the PWS Community
“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” —The Lorax, Dr. Seuss Contributed by Jennifer Andrews, Advocate and Mom to Josephine A reluctant, “OK.” That’s how I got involved in advocacy with PWSA. Pretty unexciting, isn’t it? Well, so is the first plop when you throw...
Empowering Hope: Kayla Day’s Journey as a PWS Advocate
Meet our advocate, Kayla Day, mom to Luella, age 4 with PWS. Contributed by Kayla Day After having my daughter and receiving a late diagnosis of Prader-Willi syndrome, it took years before I could discuss it with others. In these 4 1/2 years, I have met amazing families and staff through PWSA | USA. The...
PWS Mom Advocates for Wisconsin Legislation to Lower Treatment, Therapy Costs for Individuals Living with Rare Diseases
Contributed by Katie Moureau On Wednesday, January 10, 2024, Katie Moureau, mom to a 9-year-old boy with PWS was able advocate in support of Assembly Bill 687 – Authorization of Value-Based Arrangements for Medicaid Programs for all rare diseases. She was one of 2 advocates testify. As we know there are NO FDA approved treatments...