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...
Category: Advocacy
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...