Take this FAST ACTION today: Watch and share the newest family video in our FAST Feature series on Instagram!

On January 29, 2025 from 10am-3pm ET, the Foundation for Angelman Syndrome Therapeutics and the Angelman Syndrome Foundation will co-host Hope in Action: an Externally Led-PFDD Meeting on Angelman Syndrome. 

This meeting is a platform for our community to share insights and priorities directly with the FDA and other stakeholders, ultimately shaping the future of therapy development.  

The meeting will be held virtually, so you will be able to attend and participate from home. 

RSVP for the meeting today:

FAST is pleased to announce the launch of the FAST AS Literature Repository. This interactive repository serves as a dynamic, visual tool for exploring AS literature. A special thank you to Sean Ajufo, student at Princeton University, for your work on this project! 

Explore the repository:

FAST and the Angelman Syndrome Foundation (ASF) are proud to be partners with the Institute for Gene Therapies (IGT). IGT brings together experts from all areas of healthcare to push for policies that help patients get available therapeutic treatments and encourage medical innovation. 

Learn more about this partnership:

Also, both organizations are proud to unite in support of crucial legislation impacting our community! Together, we’ve signed a letter advocating for the Reauthorization of the Rare Pediatric Disease Voucher (PRV) Program, the Medicaid VBPs for Patients Act (MVP Act), and the Accelerating Kids Access to Care Act. 

Learn more about this important legislation: 

Last month, two communities held fundraisers to wrap up the CAN fundraising for the year! Heath’s Heroes in Florida and Team Ryan O’Connor in Illinois each held a second annual fundraising event to raise dollars and awareness for Angelman syndrome. We thank you both for your efforts! 

Heath’s Heroes’ 2nd Hole Out Fore Heath Golf Tournament   

Team Ryan O’Connor’s 2nd Annual Paddle Party for a Purpose

A milestone has been made as FAST Spain awarded its first research grant to a pioneering research project on two novel biomarkers for Angelman syndrome. We are so proud of FAST Spain for this accomplishment! 

Read more:

Let’s request as many state proclamations for International Angelman Day 2025 as we can! A proclamation is an official declaration issued by a government official, such as a governor, mayor, or county executive, to recognize a specific day, week, or month for awareness or celebration. Some deadlines are approaching fast so check the link below and let us know if you request!  

Find your state deadline:

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