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 appropriations requests.
As a reminder, following the inaugural Angelman syndrome congressional advocacy day in March, FAST and ASF formally submitted their appropriations requests to 95 offices following advocate meetings on the hill. From there, the requests were brought to the appropriate appropriations subcommittee by allies like Representatives Troy Balderson (R-OH), Lloyd Doggett (D-TX), Angie Craig (D-MN), Veronica Escobar (D-TX), Brad Schneider (D-IL), and Jeff Van Drew (R-NJ). House and Senate Appropriations Committees and Subcommittees, led by Senators Patty Murray (D-WA), Susan Collins (R-ME), Representatives Tom Cole (R-OK), Rosa DeLauro (D-CT), and Betty McCollum (D-MN) heard our calls for action.
As detailed in the table below, both the House and Senate FY25 appropriations draft reports include language directing the Food and Drug Administration (FDA) and the National Institutes of Health (NIH) to take specific actions to advance research and drug development for Angelman syndrome.
Our third request to Congress was to have Angelman syndrome listed as an eligible condition in the Department of Defense Peer-Reviewed Medical Research Program (PRMRP). Typically, it takes years to get on the list, but thanks to our advocates’ efforts on the hill, Angelman syndrome was added as a listed condition eligible for funding in the FY25 Senate draft!
What are the next steps? Congress must finalize the fiscal year 2025 budget—which can typically be challenging any year. The government’s fiscal year ends on September 30. However, precedent suggests that funding will not be finalized until the year's end, after the November election. But the fact that our language is included in both House and Senate draft reports makes it highly likely that it will remain in a final bill… so now, we wait.
Potential new research funding opportunity: The Department of Defense request recognizes Angelman syndrome eligibility for researchers to access funding from the Peer Reviewed Medical Research Program (PRMRP). If that provision is finalized into law, we want the AS research community to be ready to submit quality applications for competitive funding. FAST and ASF are organizing an informational webinar for researchers to explain the process of applying to PRMRP and the expected important dates.
This achievement in our first year highlights the impact that you and your loved ones made on Congress. Your personal stories and voice helped policymakers understand the value and importance of Angelman syndrome research, treatments, and care.
Please save the date for next year’s AS Congressional Advocacy Day– March 4-5, 2025.
For more information or to get involved in advocacy, please email Ryan Fischer (ryan@cureangelman.org) and Amanda Moore (amoore@angelman.org).