2025 has been an unpredictable year in politics. The rapid advancement of major reconciliation legislation kept policymakers and staff fully occupied from January through July. With that bill now passed, focus has shifted to the next urgent priority: funding the federal government through the appropriations process.
On March 5, Angelman syndrome advocates met with Congressional staff to share our top policy priorities. We emphasized the importance of caregiving legislation, protecting access to Medicaid, and securing research funding. To learn more about our 2025 priorities, click here.
Despite the many political curveballs this year, Angelman advocates have demonstrated impressive effectiveness. All three Angelman syndrome-specific fiscal year (FY) 26 appropriations requests have been recognized by Congress—a significant achievement.
Request to Congress: FDA Request: Urge FDA to prioritize patient experiences in regulatory decision-making.
STATUS: SUCCESS!
- House: Report language included in the Ag/FDA draft report! Page 74 of House Ag/FDA report
- Senate: Report language included in the Ag/FDA draft report! Page 136 of Senate Ag/FDA report
Request to Congress: NIH Request: Continue support for convening to identify better biomarkers and outcome measures for AS.
STATUS: SUCCESS!
- House: Report language included in the Labor HHS draft report! Page 105 of House Labor H report
- Senate: Report language included in the Labor HHS draft report! Page 118 of Senate Labor H report
Request to Congress: DOD Request: Continue Angelman syndrome eligibility for the Peer Reviewed Medical Research Program
STATUS: SUCCESS!
- House: Normally appears in Senate version
- Senate: Angelman syndrome is listed as eligible for funding. Page 228 of Defense report.
What’s next? We are once again cautiously optimistic. While there is still a road ahead to finalize both language and funding, inclusion in these reports is an important step forward. As Congress returned in September, lawmakers are facing a tight deadline to fund the federal government before the fiscal year ends on September 30.
If a funding bill is not enacted—an increasingly common scenario—Congress will likely either pass a Continuing Resolution (CR) to maintain current funding levels temporarily or risk a government shutdown. CRs have become routine and typically extend funding through November or December, allowing time to negotiate a broader year-end package. However, given the current political dynamics, leadership may choose to extend last year’s CR, which would maintain FY24 funding levels. This would technically exclude our FDA and NIH provisions, which is what happened last year, but agencies may still follow Congress’ draft recommendations even if they are not finalized.
Funding opportunity with the Department of Defense continues: In 2025, the Appropriations Committee once again recognized the importance of Angelman syndrome research by continuing its eligibility under the Peer-Reviewed Medical Research Program. This provides a valuable opportunity for researchers to apply for competitive federal funding.
Your advocacy made a real impact. Your stories resonated with congressional staff and their bosses, it’s a true testament to your dedication that—despite a chaotic political year—Angelman priorities remained on the agenda.
Please save the date for next year’s AS Congressional Advocacy Day– March 3-4, 2026.
For more information or to get involved in advocacy, please email Ryan Fischer (COO, FAST) and Amanda Moore (CEO, ASF) at info@angelmanadvocates.org