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.
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.
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.
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.
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.
A Unified Effort to Connect Families, Accelerate Research, and Find a Cure for Angelman Syndrome
We found solace and purpose through FAST. Their relentless pursuit of a cure resonated with us, and we started our fundraising journey with them.
ICO Registered ZA672029
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