On Monday, September 19th, 51 of PWSA | USA's advocates touched down in Washington D.C. for the first-ever D.C Fly-In! We hosted a welcome party for our attendees Monday evening, which gave them an opportunity to get to know each other and brainstorm for Tuesday's meetings on Capitol Hill.
We woke up bright and early Tuesday morning to catch our bus to the Senate and House of Representatives buildings. Our teams divided and conquered more than 70 meetings with elected officials from the around the country. During each meeting, our advocates touched on three key items:
  • Ask for a resolution declaring May 15th as PWS Awareness Day
  • Co-sponsors for Orphan Drug COVID–19 Mitigation Act (HR 8641)
  • Add Prader-Willi Syndrome as a recognized topic area for DOD research under the Congressionally Designated Medical Research Program’s Peer Reviewed Medical Research Program (PRMRP)
We ended the day with a participant dinner and reflection on what the event meant to our attendees.