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.
Important update on alogabat, an investigational therapy in development for Angelman syndrome
Roche/Genentech has discontinued its alogabat program for Angelman syndrome. FAST thanks trial participants for their commitment and shares the full letter with additional context.
FAST Poland hosts second nationwide conference, “From Diagnosis to Therapy.”
FAST Poland’s second national conference, ‘Between Dreams and Reality,’ drew 134 participants to explore diagnosis, therapy access, and education for the Angelman syndrome community.
Measuring Communication in Angelman Syndrome to Support Better Trials
New research validates ORCA, a caregiver-reported tool for measuring communication in Angelman syndrome, strengthening its use as a meaningful outcome measure in clinical trials.
A Sister-Led Sip & Shop Turns Jewelry Into Support for FAST
Sisters Amelia and Victoria turned their love of travel and design into a Sip & Shop jewelry event, raising over $4,000 for FAST in honor of Amelia’s son Orion.
Celebrating Dr. David Segal: A Leader in Science and a Champion for Angelman Syndrome Research
FAST congratulates longtime research partner Dr. David J. Segal on his appointment as Chair of Biochemistry and Molecular Medicine at UC Davis, a milestone for the AS research community.
International Angelman Day 2026: What Our Community Made Possible
International Angelman Day 2026 lit up landmarks worldwide, sparked local news coverage, and united families in social media storytelling to raise awareness for Angelman syndrome.
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.