Listen to this AS parent’s Congressional testimony! 🏛️

Hi Cure,

Have you seen our regular FAST Athletes videos on social media? If you missed them or want to watch them all again, check out our YouTube playlist below!

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If you have updates you would like to be included in next week’s newsletter, please email us at info@cureangelman.org.

No One Left Behind: The Rare Disease Community’s Imperative

Photos of David Gurzick and David with his son Chandler on his shoulders, with the logos for the Rare Disease Congressional Caucus briefing and the Rare Disease Legislative Advocates

David Gurzick, PhD, the father of Chandler, who lives with Angelman syndrome, is serving as an expert panelist representing our community at the July Rare Disease Congressional Caucus Briefing today in Washington, DC. His expertise as a leader within the patient advocacy community will provide critical insights as to policies that have — and could continue to — foster development within the rare disease community.

Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA is committed to growing the patient advocacy community and working collectively, thereby amplifying the patient voice to be heard by local, state, and federal policymakers.

FAST Athletes: Dr. Segal

FAST Athletes: Dr. David Segal with a photo of David with his bike pointing to his FAST Athletes shirt, and David being supervised while doing a push-up outside near water

In Northern California, Dr. David Segal, one of our FAST-funded scientists at UC-Davis, is on the move! By day, he and his team are working tirelessly to help advance treatments for Angelman syndrome. When he is not in the lab, you will find him running or biking around town because he understands the importance of physical exercise.

“Physical exercise is really important to manage stress and maintain good mental health. I think that is something that we all need.” - Dr. Segal

Check out ways you can focus on your physical health through our FAST Athletes CAN YouTube playlist:

Watch the FAST Athletes CAN playlist on YouTube

Newly Diagnosed

‘Thank you for the email and the welcome box, and most importantly, I want to thank FAST for bringing hope to our family when we face the most horrific news of our life.’ – mother of a newly diagnosed child, with icons for an e-mail and a welcome box

Every day, families around the world are receiving a diagnosis of Angelman syndrome. Because many of the FAST board of directors and staff have been in those very shoes, we have crafted a stepping stone process for new families to gather information in a digestible way, while meeting them where they are with their diagnosis.

We offer families a variety of resources to help educate and empower as they navigate the world of Angelman syndrome. We have information translated into six languages along with other goodies not only for the family, but the child who lives with AS as well.

If you know someone who may be living with Angelman syndrome or are newly diagnosed, we would love to connect with them.

Learn more:

Check out our newly diagnosed resources

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Six children with Angelman syndrome are pictured

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