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FAST: Our sole mission is a cure
 

Hi Cure,


Did you catch our exciting announcement yesterday about a new research partnership with the University of Pennsylvania to advance an investigational gene therapy candidate? If you missed it, you can read the announcement here.


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

 

Roche Aldebaran study

Roche: Recruitment OPEN For the Alderbaran Study to test the investigational drug: Alogabat - Genotype: Delete, Ages: >= 5 & <= 17 years, Gender: All, with a drawing of the globe

Recruitment is still open for the Aldebaran study, sponsored by Roche, to assess an investigational drug (called Alogabat) to potentially treat Angelman syndrome. While it does not involve replacing or unsilencing the UBE3A gene in individuals living with AS, it's a mechanism aimed to help improve various symptoms of AS such as learning, sleep, and seizure control.


Learn more and see if your loved one is eligible to enroll:

Learn more
 

Summit & Gala registration deadline approaching

The in-person registration deadline for the 2023 Global Science Summit and Gala is 10/27! With the October calendar and 10/27 circled

Join us in Miami this year to fill your bucket with science and hope during a weekend of education, community, and celebration! The 16th Annual Global Science Summit & Gala will be filled with AS families from around the world, experts in the AS world, exciting updates on the future of Angelman syndrome research towards a promising therapeutic, and more.


In-person registration for the 16th Annual Global Science Summit & Gala ends on Friday, October 27th. The Global Science Summit schedule is up, and community events are confirmed — you are not going to want to miss it! 


Register now to join us in Miami:

Register now
 

FAST Athlete 15-Day Challenge

FAST Athletes 15-Day Challenge, with photos of Rhian, Dan, Jon, and Amelia posing with their kids

Our FAST Athletes are proud to present a 15-day health and wellness challenge! These four athletes created fantastic videos that offer such creativity — from traditional exercises, to how to use a vacuum in your workout, to showing off your dance moves! Join us to activate or spice up your health regimen and have some fun along the way. 


We invite children, friends, family, researchers, and the entire AS community to join us, wherever you are in the world! This is such a creative way to bring awareness to Angelman syndrome!


The 15-Day Challenge begins on Friday, October 20th and ends on Friday, November 3rd. 


Join the challenge:

Join the 15-Day Challenge
 

CAN Spotlight: Spare for a Cure

A photo of the Dougherty and Edberg family at the event

“I don’t want my niece and her family to feel like they are alone on an island. I want to help.” - Paul Dougherty, great uncle of William, who lives with AS 


Last Sunday, the Will.i.CAN crew hosted their 3rd Annual Spare for a Cure event. After his great nephew was diagnosed with AS in 2020, Paul Dougherty combined his love for bowling, adoration for William, and heart of gold to bring this event to life. It’s a day of bowling, bidding, and having fun which has raised $12,500 in the last 3 years and brought together classmates, neighbors, and new friends along the way.  


We are so grateful for relatives like Paul and his wife, Gail, for rising up to be there for the Edbergs and the Angelman syndrome community! 


Read more about this event and check out photos:

Read more
 

Countdown to the Summit & Gala!

Dream Big - 23 days to the 2023 FAST Global Science Summit & Gala!
Register today
 

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Six children with Angelman syndrome are pictured
FAST - CFC, Charity Navigator Four Star Charity, Candid Platinum Transparency 2023
 
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