Update: Inaugural AS Congressional Advocacy Day
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 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!
Request to Congress
FDA REQUEST: Push the FDA to include more sensitive outcome measures, growth scale values, and expanded research on clinical endpoints and biomarkers
STATUS: SUCCESS!
House
Report Language included in the Ag/FDA draft report!
Senate
Language included in the Ag/FDA draft report!
Request to Congress
NIH REQUEST: Have the NIH convene stakeholders to prepare a roadmap for clinical outcome measures and biomarkers for Angelman syndrome
STATUS: SUCCESS!
House
Normally appears in Senate version
Senate
Angelman syndrome listed as eligible for funding
Request to Congress
DOD REQUEST: Have Angelman syndrome listed as an eligible condition in the Department of Defense peer-reviewed medical research program
STATUS: SUCCESS!
House
Normally appears in Senate version
Senate
Angelman syndrome listed as eligible for funding
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).
May 2024 Update
Since our inaugural Angelman syndrome congressional advocacy day on March 7, FAST, ASF and our AS advocates all have not let up the gas on making our asks to Congress. Our advocates have followed up requesting that their Senators and members of Congress submit requests on their behalf to the Appropriations Committees to advance AS research priorities.
As a reminder, this year, we are requesting:
- Have Angelman syndrome listed as an eligible condition in the Department of Defense peer-reviewed medical research program;
- Push the FDA to include more sensitive outcome measures, growth scale values, and expanded research on clinical endpoints and biomarkers;
- Have the NIH convene stakeholders to prepare a roadmap for clinical outcome measures and biomarkers for Angelman syndrome.
FAST and ASF have supported advocates’ efforts by officially submitting appropriations request forms to 95 offices. We are incredibly fortunate that in our first year advocating, we have several bipartisan policymakers confirming that they will submit our requests to the Appropriations Committee for Fiscal Year 2025. We have received confirmation from:
- Reps. Troy Balderson (R-OH)
- Lloyd Doggett (D-TX)
- Veronica Escobar (D-TX)
- Brad Schneider (D-IL)
- Jeff Van Drew (R-NJ)
- and there are likely more that have submitted but have not yet made us aware of their support.
What does this mean? Offices making our cause a priority means that we have a chance of reaching our goal of getting AS-specific language included in the appropriations reports. The deadline for non-appropriators to submit their request to the Appropriations Committees has now passed, and the Appropriations Committees are currently reviewing the requests and drafting their bills and reports.
The House Appropriations Committee just announced its plan to convene and mark up its legislation in June and July. We will share the reports when they are released and hopefully share good news that some or all of our priorities were included.
The impact of our community’s advocacy cannot be understated. Families, stories, and dedication to the issue moved staff and members of Congress. Regardless of the outcome this year, the relationships that you have started to build provide us a strong foundation and momentum for our advocacy going forward.
For more information or to get involved in advocacy, please email Ryan Fischer (ryan@cureangelman.org) and Amanda Moore (amoore@angelman.org).