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.
2026 Congressional Advocacy Day: Recap and Successes
138 advocates from 37 states held 139 congressional meetings this year, doubling House letter sign-ons and pushing key Angelman syndrome priorities forward in FY27 appropriations.
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.
Progress for Angelman Syndrome Relies on a Strong NIH and FDA
Angelman syndrome research is at a turning point, and federal cuts could put that progress at risk. FAST and ASF are urging congressional leaders to protect the NIH and FDA expertise that helps move treatments safely to families.
2025 AS Congressional Advocacy Day: Legislative Priorities
Ahead of the second Angelman Syndrome Advocacy Day, FAST and ASF outline key 2025 priorities: protecting NIH research funding, safeguarding Medicaid, and supporting caregiver legislation.
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.”