Take this FAST ACTION today: Follow us on social media and keep an eye out for our next “Question of the Week” post. 👀

If you’re already following us, share our posts with a friend, a family member, or a colleague!

The ASF | FAST • Ultragenyx Community Webinar on the Phase 3 Efficacy and Safety Study of Investigational GTX-102 (ASO) in Pediatrics is now available!

Watch the webinar now:

Additional questions have been submitted and we will work with Ultragenyx on getting them answered.

We are pleased to announce that the Externally Led Patient Focused Drug Development (EL-PFDD) Survey is now open. This is an opportunity for parents and caregivers to share your experiences on living with the condition, including our perspectives on treatments for your loved ones, with drug developers, clinicians, and FDA staff. Results of this survey will help inform the discussion at the January 2025 meeting, so your participation is critical.

Please head to the new Angelman Syndrome Advocacy Site where the community can find all information regarding joint advocacy efforts between ASF and FAST.  

Begin the survey here:

The last pillar of FAST’s Roadmap to a Cure 2.0 is Pillar 4. These are the actions that are intended to allow the work from Pillars 1 through 3 to reach individuals living with Angelman syndrome to ensure potentially transformative therapeutics are advanced from bench side to bedside including developing the right tools, outcome measures, biomarkers, and understanding the natural history of the disease. 

Read more about Pillar 4:

Registration to join us in-person at this year’s Global Science Summit & Gala has closed but you can still participate virtually from wherever you are in the world! All Global Science Summit presentations will be live-translated into 61 different languages so both virtual and in-person attendees will be able to read the captions or listen along, in their chosen language, in real time. 

Register now to participate virtually:

The Gala is FAST’s largest fundraiser of the year. If you are joining us in person—we look forward to seeing you! We hope you are ready to stand tall and raise your paddle at the giving level that inspires you! Every gift, no matter the amount, supports FAST’s relentless pursuit of a cure for Angelman syndrome. Your generosity is so appreciated! 

If you are NOT able to join us in person, please know you can still “raise your paddle” virtually! Every dollar donated via the QR code below, will be recognized on the “big screen” during the Gala. And every gift will be celebrated and added toward the night’s fundraising total. Philanthropy is an act of love, so join us no matter where you are on November 9th!   

Sign up to raise a paddle virtually:

FAST’s Family Council is rebranding to articulate the actions this group of volunteers is doing to support the mission of FAST. The new name will be FAST Action Council and many of these council members will be at this year’s Global Science Summit & Gala – be sure to find them! 

Meet the FAC:

In its 3rd year, the Remi Cup: Drive for a Cure inspired 104 golfers to tackle Cherokee Hills Golf Club in Catoosa, Oklahoma on Sunday, October 6th in support of research to cure Angelman syndrome. Your ongoing generosity and support of FAST are making an impact on life-changing science that is happening now! 

Read more and check out photos:

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