Thank you to all our Angelman syndrome advocates that were with us on the ground in D.C. and those who helped from home! We are so grateful to this community’s ongoing support and dedication. This year, we had 134 advocates on the ground, representing 30 states and 143 meetings. From home, we had 425 supporters send 1280 letters, from an additional 12 states. In total, 42 states represented and 559 digital and on the ground advocates.
Successes
Our advocacy priorities on the hill this year fell into two buckets: AS-specific congressional appropriations and legislation to support care and caregiving.
For our AS-specific asks of Congress, we had three requests for Congress to support as they craft fiscal year (FY) 2026 appropriations to fund federal agencies. These asks build upon our FY25 appropriations requests, which we were successful in advancing into both the House and Senate drafts. For FY26, we have secured congressional champions Rep. Troy Balderson (R-OH) and Rep. Angie Craig (D-MN) to lead the charge in asking congressional appropriators to include language directing:
- The Food and Drug Administration (FDA) to prioritize patient experience data in drug development and review and ensure that treatments delivering meaningful improvements are recognized in the regulatory process. Families living with Angelman syndrome know that even small improvements in self-care (like dressing or eating) and in navigating their own environment, can be life changing.
- The National Institutes of Health (NIH) to follow up on the stakeholder convening to support funding for clinical outcome measures, biomarker development, and to ensure timely data sharing across investigators and industry. We also urged members of Congress to oppose broad cuts to the NIH.
- The Department of Defense Peer Reviewed Medical Research Program (PRMRP) to continue to include AS as an eligible condition for funding.
This year, we added a critical element to our advocacy: legislation to support care and caregiving. We urged members of Congress to support the Credit for Caring Act, which would provide a tax credit to help families offset some of the costs of caregiving. We also urged Congress to oppose any proposals that would reduce funding or eligibility for Medicaid, which is a critical point of access to care and services for our community.
Medicaid
As we discussed in depth at our advocacy day training, the House budget resolution passed in February includes $880 billion in federal spending cuts, which by necessity would include cuts to the Medicaid program. Now that the FY25 CR is done, Congress will turn back to this process: the next step is to decide which budget resolution blueprint to use and then write a reconciliation bill accordingly. Thus, we do not yet know the details of exactly how or when Medicaid cuts might occur, but we stand at the ready to advocate against any cuts that would hurt our community.
During our hill visits, our advocates shared their stories about Medicaid services they rely on. This is critical as lawmakers can put a face to their policy decisions and understand the true impact is more than dollars on a spending line item.
Credit for Caring
The Credit for Caring Act had broad bipartisan support last Congress. When it is reintroduced this Congress, we will notify the community to encourage your members of Congress to sign on in support.
In our meetings, we were successful in spreading awareness about AS and what it is like to be a family living with the condition. We built new relationships with our local members of Congress and will continue to develop those Members into our champions. Our advocacy is not over – FAST and ASF will continue to advocate for these priorities throughout the year and keep you updated on successes and failures as well as ways you can stay engaged in the efforts.
Status of Last Year’s Asks
Appropriations
Fiscal year 2025 began October 1, 2024. However, Congress did not pass appropriations bills into law before that date. Instead, Congress continued to fund FY25 at FY24 levels until March 14, 2025, the week before we came to Capitol Hill. When we were on the hill, we did not yet know how Congress would handle the remainder of FY25 government funding. Late last week before the March 14 deadline, Congress passed another continuing resolution (CR) to fund the remainder of FY25 (through September), mostly at FY24 levels.
For our priorities, this means:
- NIH funding overall was cut by less than 1%, which is relatively stable in an environment where federal funding cuts are being made.
- Since a CR was passed rather than appropriations bills, the FY25 appropriations language we secured was not technically included. However, in our advocacy with the agencies, we can still point to congressional intent with the House and Senate draft appropriations reports.
- Unfortunately, the Department of Defense (DOD) Congressionally Directed Medical Research Program (CDMRP), and the Peer Reviewed Medical Research Program (PRMRP) within it, were cut by 57% and 41%, respectively. Since Angelman syndrome was added as an eligible condition in the FY25 reports and was not previously in FY24, it unfortunately will not be an eligible condition for FY25.
- The pediatric priority review voucher (PRV) to encourage drug developers in that space was not extended, thus separate advocacy must continue on that policy.
The overall cut to the DOD PRMRP and our inclusion on that list is very disappointing as we will not yet be eligible to apply for that critical research funding. However, the cuts were due to factors outside of our control and not targeted specifically at us. Our advocacy has led to congressional champions taking up our cause and being on paper in the FY25 reports sets us up well to continue to advocate for FY26 and beyond.
We will continue to engage with the community regarding opportunities throughout the year to connect with members on a variety of issues related to our priorities, ensuring that our voices remain at the forefront.