Hi Cure,

We’re now officially less than two months from the 2023 Global Science Summit & Gala!!

We’ll continue to reveal exciting activities and opportunities over the next eight weeks, including the community events below.

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

The Annual Global Science Summit & Gala is a time when families can come together once a year to as fellow members of a club they never wanted to be part of — to share, laugh, cry, learn, and support each other. 

This year in Miami, FAST is curating several opportunities for our community to engage with each other and specialists from various modalities — and we cannot wait! 

• President’s Welcome – Happy Hour with Alana!
• FAST Athlete workouts with Rhian Adams + special guests Dr. Elizabeth Berry-Kravis and Dr. David Segal
• Friday evening community event
• Ask a Specialist — schedule 1:1 appointments with specialists who can help your child’s everyday needs and development 
• Lunch & Learn on Saturday with folks from P.S. 15 in Brooklyn, NY to learn how you can advocate for a program in your child’s school like New York families did in theirs

Register now:

Welcome Dr. Nadia Bahi-Buisson to the FAST Scientific Advisory Board!

Nadia is a university professor and hospital practitioner in the Neuropediatrics Department of CHU Necker Enfants - Malades, Université Paris Descarte. She oversees the Reference Center for Rare Diseases and the Fetal Neurology outpatient clinic. Dr Bahi-Buisson is a clinical expert in AS and is running current ASO clinical trials. She will be helping to advise us as we advance clinical development programs for Angelman syndrome.

Learn more about our Scientific Advisory Board:

On September 15th, Dan Growden, a FAST Athlete from Canada and father of Sawyer Grace who lives with AS, will endure a 7-8 hour gravel bike race at the Hurtin in Haliburton. Dan has a passion for biking and like many, has had a busy summer impacting his training plans. He is accepting that he won’t be as fast as he wants to and there will be a lot of times he’ll probably want to quit. He also knows that he’ll feel the sense of pride once he pushes through those moments.

“I hope my little challenges or events will inspire people to sign up for things that they are scared of or think will be hard. I truly believe the words of Ray Zahab: ‘It’s 90% mental and the other 10% is all in your head.’” 

Dan is using this endurance challenge to raise funds and bring awareness for Angelman syndrome. Follow Dan’s journey on instagram: @dangrowden 

Learn more about FAST Athletes:

It’s back to school time for many in our community. Whether your child is off to their first day or a seasoned student, we want to remind you all that we have complimentary resources to help educate your educational team and classmates.

Request Angelman syndrome info cards that you can pass out:

Check out more resources here:

Thanks for reading, and please share this link with anyone in your network who would be interested in receiving our weekly newsletter.