Angelman Syndrome Caregiver Survey
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.
Our Board of Trustees comprises passionate individuals, many with personal connections to Angelman Syndrome, who guide our mission with expertise and dedication. Their diverse backgrounds in fields such as psychotherapy, finance, law, and investment enhance our strategic direction and advocacy efforts. Together, they work tirelessly to advance research and provide support to the Angelman community.
Julien de Bournet is an investment professional and is the father of Calixte, a beautiful little boy who was diagnosed with Angelman Syndrome in 2013 when he was one. Following Calixte’s diagnosis, Julien and his wife Gaëlle made it part of their life’s goal to support all the efforts towards finding therapeutics for Angelman Syndrome and help the Angelman community. As a result, Julien joined FAST UK in 2017 and is in charge with keeping abreast of all the ongoing science. Gaëlle and Julien have also two other children Aloïs and Gaïa.
Sarah Washbrook is mother of Ivor, who was diagnosed with Angelman syndrome in 2022 when he was 3 years old. She lives in Monmouthshire with her husband Andy and their two other children, Bethan and Olwen, and juggles life as a solicitor, mum and carer.
Following Ivor’s diagnosis, Sarah was determined to turn her grief into positivity and hope and turned to FAST and its mission to find treatments for Angelman syndrome. She is a driving force within FAST UK, working tirelessly for our Angelman community and dedicated to raising awareness of Angelman syndrome, advocacy and supporting the roadmap to regulatory approval of treatments.
Our employee supports the daily operations of the charity and works closely with the Board of Trustees to deliver projects, communications, and community engagement that help advance our mission. As FAST UK’s first and currently only part-time employee, this role provides dedicated operational support.
Heather Brady is the Events and Community Engagement Manager for FAST UK and the proud mother of Cecilia, who was diagnosed with Angelman syndrome in 2020 at the age of two. Heather lives in Manchester with her husband, Thomas, and their two children, Tommy and Alexa. Devastatingly, Cecilia passed away just before her fourth birthday, but she continues to inspire Heather, Thomas, and their family every day. In her memory, they are dedicated to raising awareness and organising fundraising activities for FAST UK, including their much-loved “Cycle for Ceci” events and the junior edition, which brings together children and their community each year. As FAST UK’s first paid member of staff, Heather works part-time to support fundraising efforts and strengthen connections across the Angelman community.
Are you a caregiver for someone with Angelman syndrome? Your experiences are invaluable, and we want to hear from you.
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.
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 found solace and purpose through FAST. Their relentless pursuit of a cure resonated with us, and we started our fundraising journey with them.