How One Night of Paddle Is Powering Angelman Syndrome Research
The O’Connor family’s Paddle Party for a Purpose raised over $72,000 for Angelman syndrome research—more than doubling last year’s total for son Ryan and families everywhere.
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.”
Trips for Tripp: A One-of-a-Kind Fundraiser With a Clear Goal
With a donated South Texas hunt drawing, Ally and Jared Seago raised over $16,600 for FAST—turning a personal connection into meaningful support for son Tripp and Angelman research.
FAST × ASA Angelman Syndrome Clinical Trials Webinar: Europe/UK Sites, Eligibility, and How to Join Trials
FAST and ASA co-hosted a UK/Europe session with Ultragenyx and Ionis, giving families clear updates on ASO trial programs ASPIRE and REVEAL, tailored to UK/EU time zones.
Remi Cup: Driving for a Cure to Angelman Syndrome
The Remi Cup, an annual charity golf tournament in Oklahoma, raises around $35,000 each year for FAST, driven by one family’s love and hope for daughter Remi’s future.
Rewind, Press Play, Kick AS: A Party With a Bigger Purpose
Ellen and Ferre turned an old-school themed party into their first Kick AS fundraiser, transforming fear into action and community love for daughter Hazel into support for FAST.
If Will CAN, We CAN: A Family’s Vision to #KickAS in Minneapolis
Now in its third year, the Edbergs’ ‘If Will CAN, We CAN’ event has raised over $200,000 combined, growing from a rallying cry into a true community for son William.
How Harper’s Hope Golf Tournament Has Raised Over $350,000 for Angelman Syndrome Research
In its 12th year, Harper’s Hope Golf Outing has raised over $350,000 for FAST, with this summer’s Kentucky and Owensboro events alone bringing in more than $50,000 combined.
MavriX Bio MVX-220 Update
MavriX Bio’s gene therapy MVX-220 receives FDA Fast Track designation, with its Phase 1/2 ASCEND-AS trial now listed and a community webinar set for October 9.
Maddie’s Mission Hits $1M Raised for Angelman Syndrome
Maddie’s Mission has raised over $1 million in four years through the Sargent family’s annual Kansas City block party, powered by community, hope, and a father-daughter dance.