March 4-5, 2025 | Washington, DC
Registration opens late December 2024
On March 7, 2024, Angelman syndrome advocates from around the United States met in Washington, D.C. for the Inaugural Angelman Syndrome Congressional Advocacy Day.
As the historic day kicked off on Thursday, a total of 65 advocates representing 25 states and Washington D.C. migrated to Capitol Hill to meet with their Members of Congress. A total of 111 meetings were scheduled between the Senate and House offices. During each meeting, the advocates took the opportunity to educate their representatives on their personal experiences with Angelman syndrome to accomplish one of our inaugural goals of building relationships and bringing awareness to AS.
Thanks to the efforts of our amazing AS advocates earlier in the year, FAST and ASF were proud to announce that we have achieved initial success in our fiscal year (FY) 2025 congressional appropriations requests.
Following the inaugural Angelman syndrome congressional advocacy day in March, FAST and ASF formally submitted their appropriations requests to 95 offices following advocate meetings on the hill. From there, the requests were brought to the appropriate appropriations subcommittee by allies like Representatives Troy Balderson (R-OH), Lloyd Doggett (D-TX), Angie Craig (D-MN), Veronica Escobar (D-TX), Brad Schneider (D-IL), and Jeff Van Drew (R-NJ). House and Senate Appropriations Committees and Subcommittees, led by Senators Patty Murray (D-WA), Susan Collins (R-ME), Representatives Tom Cole (R-OK), Rosa DeLauro (D-CT), and Betty McCollum (D-MN) heard our calls for action. Read More
A PDF that has information about Angelman syndrome, why we need research funding, and who FAST and ASF are.