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Angelman Syndrome Caregiver Survey
Are you a caregiver for someone with Angelman syndrome? Your experiences are invaluable, and we want to hear from you.
07/03/2025
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Are you a caregiver for someone with Angelman syndrome? Your experiences are invaluable, and we want to hear from you.
A Unified Effort to Connect Families, Accelerate Research, and Find a Cure for Angelman Syndrome
We are thrilled to share the incredible success of Art for Angelman 2024, which raised a record breaking £66,000 for FAST UK. This outstanding achievement makes it our biggest fundraiser of the year.
When we received Cecilia’s diagnosis in 2020 when she was 2 years old, it felt like an overwhelming blow, and when we were told there was no cure, we just could not accept this and started looking straight away at what we could do for our beautiful girl.
We are thrilled to reveal the winner of our Community Member Award, an initiative recognizing individuals who’ve made a significant impact within the Angelman syndrome community in the UK.
My life took an unexpected turn when my 4-year-old son, Ivor, was diagnosed with Angelman Syndrome just after his third birthday.
A Unified Effort to Connect Families, Accelerate Research, and Find a Cure for Angelman Syndrome
Our son, Hudson, is our real life Angel! Our blue eyed boy was born on 1st December 2020, eager to meet us as he came 3 weeks early. Hudson’s big sisters, Amelia and Madison were delighted with their new role as…
So where did it all begin? I knew very early on that something was unique about Ivor. I waved my hands, but people said I was fussing; he’s just a boy. I suppose this is when the grieving started for me, the fear, the worries.
February 15th 2023, marks the 10 year anniversary of International Angelman Day, It is also the tenth year that an Angelman group, created by an Angelman mum, Linda Holmes, took place at their usual venue Alton Towers.
Flying back home from Austin, where FAST Global Science Summit dedicated to Angelman Syndrome took place in December, I was thinking of how amazing it would be to organise something of a similar scale in the UK and every other country for that matter.
The 2025 Alton Towers event for International Angelman Day marked an incredible 12 years of bringing families together for a weekend of fun, connection, and celebration!
International Angelman Day (IAD) is an opportunity to raise awareness of Angelman syndrome globally! Two AS parents started IAD in 2012 and engaged 31 Angelman syndrome organisations worldwide to join their efforts.
We are thrilled to share the incredible success of Art for Angelman 2024, which raised a record breaking £66,000 for FAST UK. This outstanding achievement makes it our biggest fundraiser of the year.
We were amazed by how brilliant a recent fundraising event was organised as part of the CAN Campaign by Ceci’s parents. Ceci’s mum Heather is sharing their experience in today’s Fundraising Spotlight.
We are always impressed by the energy and passion our fundraisers are demonstrating in the events they organise. Today, we are happy to share a story behind Bella’s parents, Rachel and Rich, fundraising in the Fundraising Spotlight.
A Unified Effort to Connect Families, Accelerate Research, and Find a Cure for Angelman Syndrome
FAST Launches Two Biotech Companies to Advance Investigational Gene-Targeted Therapies for Angelman Syndrome
New trial, Aurora, to test GTX-102 in other Angelman genotypes, age groups
We are thrilled to share that Ultragenyx has released promising interim findings from their Phase 1/2 clinical trial involving patients living with the deletion genotype of Angelman syndrome.
As part of International Angelman Day, Heather Brady, Louise Prince, and Sarah Washbrook took to the airwaves to raise awareness about Angelman syndrome, the work of FAST UK, and the urgent need for research and support.
We’re so proud of Sarah Washbrook, a dedicated mum, advocate, and fundraiser, who is helping to shine a light on Angelman syndrome. She and her son, Ivor, were recently featured in a BBC Wales article about working carers, sharing the realities of life as a parent to a child with Angelman syndrome.
Welcome to your one-stop source for the latest updates on clinical trials for Angelman Syndrome therapeutics. Our Angelman Syndrome Therapeutics Bulletin is a biannual publication designed to provide a snapshot of current clinical trials, their phases, locations, included genotypes, and more.
This bulletin is not just for families affected by Angelman Syndrome, but also for doctors, researchers, pharmaceutical professionals, and regulators. It’s a valuable resource for anyone who wants to stay informed about the latest developments in Angelman Syndrome research.
The bulletin is designed to be easy to read and share. It’s formatted for printing on a single A4 sheet, making it perfect to take to your next doctor’s appointment or to share with caregivers and relatives. Each issue also includes a QR code for easy online access and subscription.
We encourage you to share the bulletin with your doctors, caregivers, and relatives. The more people who understand Angelman Syndrome and the latest therapeutic approaches, the better.
Want to learn more about Angelman Syndrome? Visit our Understanding Angelman Syndrome page. Interested in the different therapeutic approaches being explored? Check out our Therapeutic Approaches for Angelman Syndrome page.
We found solace and purpose through FAST. Their relentless pursuit of a cure resonated with us, and we started our fundraising journey with them.
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