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 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 dedication of U.S. Congressman Paul D. Tonko (D-NY) and Congresswoman Maria Elvira Salazar (R-FL). They introduced a joint resolution officially declaring the day of recognition last year on May 15, 2023.

Organized by PWSA | USA, the 2nd D.C. Fly-In event has seen remarkable growth since its inception in September 2022, with attendance growing from 50 individuals to nearly 150. Among those participating are parents, caregivers, siblings, extended family members, and individuals living with Prader-Willi syndrome.

This two-day event kicks off May 14th with a rare disease policy dive, which will extend through May 15th when our advocates will begin the celebration of PWS Awareness Day on the floor of the U.S. House of Representatives. Throughout the day, advocates will engage in more than 100 meetings with elected officials and their staff to raise awareness for PWS and advocate for support on three critical initiatives.

These initiatives include the Promising Pathway Act 2.0, aimed at advancing research and treatments for rare diseases like PWS; the Peer Reviewed Medical Research Program (PRMRP), which provides funding for innovative medical research; and a congressional letter of support to the FDA, urging continued attention to PWS-related issues.

“This is an extremely important time for our rare disease community,” said PWSA | USA CEO Stacy Ward, MS, BCBA. “By coming together in Washington, D.C., we are amplifying our voices and advocating for policies and initiatives that can profoundly impact the lives of those affected by Prader-Willi syndrome.”

“I have been an advocate for my daughter since she was born 12 years ago – every time we walk into a doctor’s office, therapy appointment, or IEP meeting, when she starts a new sport or we meet a new family, every phone call with an insurance agent or pharmacy, and beyond. I have always been the only PWS parent in the room, with the exception of my husband. Now I get to travel to our nation’s capital and share our story in the halls of legislature alongside people who can relate. Attending this fly-in is an incredible opportunity to not only advocate for my daughter, but an entire community,” said Anne Fricke, mom to Freya (12), living with PWS.

For more information about PWS Awareness Month and how you can get involved, please visit PWSA | USA’s dedicated webpage:

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