Dream Big: One Family’s Journey from the Altar to the Start Line
Thomas and Johanna Kennedy turned their daughter Anabella’s Angelman syndrome diagnosis into a movement—weaving advocacy into their wedding and now running the Dublin Marathon for a cure.
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.
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.
A Home Court for Hope: Drexel Women’s Basketball Champions Angelman Syndrome Awareness
Drexel Women’s Basketball’s third annual Angelman syndrome awareness night brought Gabe D’Orazio’s story to center court, turning a beachside idea into a lasting community tradition.
Turning Possibility Into Progress: The Rush F.A.S.T. Center for Translational Research Opens in Chicago
FAST and Rush University Medical Center opened a $5 million translational research center, a groundbreaking hub built to accelerate Angelman syndrome trials and train specialists.
International Angelman Day 2025: Round-Up
The global Angelman syndrome community celebrated International Angelman Day through blue illuminations, educational presentations, school activities, and outreach campaigns to raise awareness.
CAN Community Spotlight: Joelene
Joelene Wand, mother of Jude, shares how attending the FAST Global Science Summit renewed her hope, deepening her advocacy for the Angelman syndrome community in Australia.
FAST Germany’s Wachgeküsst campaign
FAST Germany relaunches ‘Wachgeküsst,’ aiming to raise €250,000 for Angelman syndrome research, building on a 2020 campaign that funded Munich’s first Angelman syndrome clinic.
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.”
The PFDD Survey is now open
The EL-PFDD Survey is now open, inviting parents and caregivers to share their experiences with Angelman syndrome to help shape the January 2025 FDA discussion.