The Angelman Syndrome Drug Development Pipeline is a window into the scientific progress that gives our community hope. Currently, there are 23 therapeutic programs, 12 funded by FAST, and 4 potential therapeutics currently have ongoing clinical trials.

Explore the tool:

FAST supporters around the world stepped up this May–from ice rinks in Massachusetts to gyms in Germany–to raise funds and awareness of AS. We are incredibly grateful for the passion and energy of our global community!

The Skating Angels hockey tournament returned to Boston for another incredible year, led by Danielle and Jeff Kowalski, parents of Bruce, who lives with AS. With help from their community, the Kowalskis raised more than $18,000 for FAST! 

Learn more about Skating Angels and check out photos:

The Teutonic Crossfit gym in Germany was full of energy for the second annual Kettlebells for Kayleigh fundraiser, hosted by Sara and Josh Gainey, parents of Kayleigh, who lives with AS. The event doubled in size since last year and raised over $7,000–a powerful show of strength and community in action.  

Learn more about Kettlebells for Kayleigh and check out photos:

The federal committee that guided newborn screening — the ACHDNC — was dissolved in April, leaving patient organizations, medical professionals, and families without a clear path to advocate for adding new conditions like Angelman syndrome. 

This matters. Early diagnosis could potentially improve outcomes for a child living with AS. It could open the door to therapies and interventions during crucial windows of brain development and may grow even more critical as genetic treatments move forward.

FAST and ASF joined 270 other organizations urging HHS Secretary Kennedy to immediately reinstate ACHDNC and protect our nation’s federal newborn screening infrastructure.   

Read the letter:

FAST was the only patient advocacy organization invited to this year’s American Society of Gene & Cell Therapy (ASGCT) Annual Meeting, one of the most influential gene therapy conferences in the world. 

From speaking on how advocacy is shaping science to seeing 10 AS-focused presentations, our presence made one thing clear: Angelman syndrome is gaining momentum in the field of genetic medicine.

See what we learned and why it matters:

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