Ionis completes enrolment in pivotal cohort of the Phase 3 REVEAL study evaluating obudanersen in Angelman syndrome
“Guided by input from the Angelman community, REVEAL was intentionally designed to evaluate obudanersen across a broad range of people living with Angelman syndrome, reflecting the real-world diversity of this condition. We are deeply grateful to the entire Angelman syndrome community, especially the participants and their families, whose partnership made this achievement possible.” – Holly […]
Support FAST UK Every Time You Shop Online – At No Extra Cost
The donations generated from individual purchases may seem small, but when our community comes together, those donations quickly add up. By choosing to shop through easyfundraising, you’re helping to support the research that brings us closer to better treatments and ultimately a cure for Angelman syndrome.
Sarah Shares Her Family’s Angelman Syndrome Journey on BBC Radio Wales
FAST UK Trustee Sarah recently appeared on BBC Radio Wales to share her family’s experience of Angelman syndrome and the impact it has had on their lives.
Parent Blog: Carers Week 2026 – Please, give us a smile…by Sarah Washbrook
Please, give us a smile
I’m Mum to 6 year old Ivor, who lives with Angelman syndrome. This is a rare neurogenetic disorder affecting about 1 in 15,000 – about 500,000 worldwide.
People living with Angelman syndrome are significantly intellectually disabled, have balance and coordination issues, motor impairments and many have debilitating seizures.
Some will never walk. Most will never talk.
Life changing.
I’d like you to step into my life as a parent carer, just for one day.
Oak Hill Bio has shared a community letter to the Angelman syndrome community
Oak Hill Bio has shared a community letter to the Angelman syndrome community with an important update on the next steps of the development of rugonersen. They are actively preparing to initiate the Phase 3 study in the middle of 2026. Eligibility criteria are available on clinicaltrials.gov; additional details, including study locations, will be updated as […]
Genomics Showcase held at Cardiff City Stadium
FAST UK Trustee, Sarah Washbrook, proudly represented FAST UK at the national Genomics Showcase, held at Cardiff City Stadium, where she shared her family’s journey of living with Angelman syndrome and the lived experience of caring for her son, Ivor.
International Angelman Day 2026 – Alton Towers Weekend
To everyone who helped make this year’s International Angelman Day Alton Towers weekend possible, thank you.
FAST UK update note March 2026
Are you a caregiver for someone with Angelman syndrome? Your experiences are invaluable, and we want to hear from you.
Life of a Parent Carer: a spotlight on Angelman syndrome
As part of International Carers Week (w/c 9 June), we’re honoured to share a powerful and heartfelt article by Sarah Washbrook, a dedicated parent carer and long-time supporter of FAST UK.