CAN Spotlight: Skating Angels Charity Ice Hockey Tournament
Danielle and Jeff hosted another successful Skating Angels event to benefit FAST, raising over $18,000 for the Angelman syndrome community through adult and mini 3v3 hockey tournaments.
MavriX Bio Announces FDA Clearance of IND Application to Initiate First-in-Human Study of Gene Therapy for Angelman Syndrome
The FDA has cleared MavriX Bio’s IND application for MVX-220, an investigational AAV gene therapy for Angelman syndrome.
FAST Speaks at the 2025 MENA Congress for Rare Diseases
FAST representatives Amelia Beatty and Ellen Koekoeckx presented at the MENA Congress for Rare Diseases in Abu Dhabi, highlighting the Angelman syndrome therapeutic pipeline and connecting with regional families and researchers.
Expanding the Pre-Clinical Research Landscape for Angelman Syndrome
FAST currently manages over 20 active research grants for Angelman syndrome and is expanding its infrastructure by broadening its Scientific Advisory Board and streamlining its grants management system.
Oak Hill Bio to continue the development of rugonersen, an investigational ASO previously owned by Roche.
Oak Hill Bio has entered into an exclusive global licensing agreement with Roche to acquire and advance rugonersen, a Phase 3-ready investigational ASO treatment for Angelman syndrome.
CAN Spotlight: Bike 4 Briar Starts May 27th!
Todd Downey and Charlie Nuck are cycling 4,300 miles from Washington to Maine over 56 days to raise awareness and funds for FAST in honor of 5-year-old Briar, who lives with Angelman syndrome.
FAST-funded researcher highlights the involvement of UBE3A in different neurodegenerative diseases
New research spotlights UBE3A as more than the gene behind Angelman syndrome—revealing how its role across brain cells could unlock insights for AS, autism, Alzheimer’s, and other neurological conditions.
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.
IONIS REVEAL Phase 3 Clinical Trial Update
The next chapter for ION582 is here: Ionis’ Phase 3 REVEAL trial is now listed, marking an important step toward a potential treatment for Angelman syndrome. Join FAST, ASF, and Ionis to learn what comes next.
Exciting Announcement: Launch of Our New Electronic Journal
FAST has launched FAST-DART, a new open-access journal built to share every Angelman syndrome research finding, including negative results, so no discovery is lost, and progress toward treatments can move faster.