Earlier this month, Angelman syndrome advocates from around the United States met in Washington, D.C. for the Inaugural Angelman Syndrome Congressional Advocacy Day. Upon completion of their training, these advocates met with staff and members of Congress. Their goal was to share personal stories about their loved ones living with Angelman syndrome and ask for the federal government’s support for the AS community and our engagement with important government agencies.

"This was one of the most impressively organized and strategically thoughtful lobbying efforts I’ve seen in over four decades." - Jerry F, grandfather of Peter who lives with AS.

Learn more about this exciting day of action:

Zaiver, who lives with Angelman syndrome, smiles brightly in Hong Kong with his parents, Vivian and Michael. This heartfelt article spotlights this family’s journey through AS in Hong Kong while serving as a reminder that communities around the world face unique challenges when it comes to diagnosing AS, to a hope for clinical trials in their region. 

FAST runs a Search & Rescue Initiative in partnership with the Global Angelman Syndrome Registry (GASR) to help find individuals living with AS around the world. In order to convince the pharmaceuticals to progress from drug discovery to clinical trials, finding the patients is as crucial as getting the science right and securing the funding. 

Read the article here:

For those who have not met Heather Brady, mother of Cecilia, who lived with Angelman syndrome, we’d like to introduce you to her now. Heather is a symbol of strength, resilience, and a true inspiration for the AS community. She is FAST UK’s first paid staff member taking on the role of Operations Manager while also doing her own fundraising efforts in memory of her daughter.

Learn more about Heather:

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