Spring Advocacy Update: Educating, Advocating, and Building Momentum
A productive spring for Hope in Action: all Angelman syndrome priorities included in House FY27 appropriations reports, plus a new DOD grant opportunity now open thanks to your advocacy.
Hope In Action: Angelman Community Delivers Big Wins in FY26 Fund Bill
Congress passed FY26 appropriations with all three Angelman syndrome priorities intact, unlocking $370 million in DOD research funding and advancing key FDA and NIH commitments.
FAST COO Ryan Fischer Named 2026 Co-Chair of EveryLife Community Congress
Ryan Fischer, FAST’s COO, has been named a 2026 Community Congress Patient Advocacy Group Co-Chair, leading regulatory science efforts for the rare disease community.
Join Us on Capitol Hill: Advocate for Angelman Syndrome Research and Awareness
Join FAST on Capitol Hill for its third Congressional Advocacy Day—no experience needed, just your story—to help keep Angelman syndrome a federal priority.
Call on Congress to Enact the FY2026 Defense Appropriations Act
FAST and ASF join a national coalition urging Congress to fully fund DOD medical research programs, protecting critical federal funding for Angelman syndrome research.
Voice of the Patient Report Submitted: A Powerful Milestone for the Angelman Syndrome Community
The Voice of the Patient Report from the Angelman syndrome EL-PFDD Meeting has been submitted to the FDA, capturing families’ lived experiences to help drive meaningful treatments forward.”
February 2025: Advocacy updates and actions to take
Despite the postponement of the EL-PFDD meeting, FAST and ASF continue joint advocacy work, from Congressional Advocacy Day to new toolkits and a rare disease policy letter to the administration.
Update on Advocacy Efforts and Ways to Get Involved in 2025
FAST and ASF kick off 2025 with advocacy updates, outlining ongoing FY25 congressional requests, key healthcare legislation, and ways for families to get involved this year.”
FAST and ASF Advocate for Crucial Legislation
ASF and FAST sign a joint letter supporting key legislation—the PRV Program, MVP Act, and Accelerating Kids Access to Care Act—to speed treatment access for the Angelman community.
RSVP for the January 2025 EL-PFDD Meeting
FAST and ASF will co-host a virtual Externally Led-PFDD Meeting on January 29, 2025, giving the Angelman syndrome community a direct voice with the FDA on therapy development.