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.
FAST’s Action Council member, Joe D’Orazio, shares his story with CNBC Cures
When an ER physician’s son was diagnosed with Angelman syndrome, he learned what no medical training could teach: how grief, exhaustion, and love reshape a family—and a career.
Career Development Awards Expand the Next Wave of Angelman Syndrome Research
FAST and ASGCT are funding three Career Development Awards for early-career scientists, advancing gene editing, siRNA, and delivery approaches to restore UBE3A in Angelman syndrome.
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.
FAST Leaders to Speak at the CNBC Cures Summit on Patient- and Family-Led Advocacy
FAST joins the inaugural CNBC Cures Summit as the only patient advocacy org on stage, spotlighting how family-led models are accelerating rare disease drug development.
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.
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.