AS Advocates Achieve Initial Wins Resulting from Inaugural Congressional Advocacy Day Thanks to the efforts of our amazing AS advocates, FAST and ASF are proud to announce that we have achieved initial success in our fiscal year (FY) 2025 congressional […]
Read more
ASF & FAST joined dozens of other organizations to advocate for federal efforts aimed at supporting caregivers. Both organizations signed a letter supporting the establishment of The Office of Caregiver Health, and a letter endorsing the Alleviating Barriers for Caregivers […]
Read moreOn March 7, 2024, Angelman syndrome advocates from around the United States met in Washington, D.C. for the Inaugural Angelman Syndrome Congressional Advocacy Day. In preparation for the event, ASF, FAST and our partners, Faegre Drinker and Soapbox, led a […]
Read more
FAST and ASF will be joining numerous other rare disease groups on Capitol Hill in person. While we are in DC, we invite the Angelman syndrome community to register for informative sessions with the NIH, Everylife Foundation and FDA and […]
Read more
ASF and FAST are proud to be among over 160 patient advocacy organizations urging Congress to consider two technical corrections to address the unintended consequences of the orphan drug exemption of the Inflation Reduction Act that will help preserve hope and […]
Read more
The past month has been a real rollercoaster for our family with many sleepless nights and a mix of emotions from uncertainty to anxiety due to Non-Convulsive Status Epilepticus (NCSE). I want to share our recent experience in hopes that […]
Read moreIn this exclusive Q&A session, we heard from a remarkable individual who wears multiple hats— a mother, a pediatric gastroenterologist, and a physician-scientist. She is on a mission to improve the lives of those dealing with neurodevelopmental differences. Kara Margolis, […]
Read moreNovember is Caregiver Awareness Month. To honor the loving, hard working, remarkable caregivers of the Angelman community, we’ve compiled a list of resources and services geared toward YOU, the caregiver. Even though caring for an individual with AS can be […]
Read more