Thank you to all of our Angelman syndrome advocates who joined us in Washington, DC, as well as those who supported from home. Your continued dedication and engagement are critical to advancing our shared priorities. This year, we had 138 advocates representing 37 states who participated in 139 congressional meetings. This reflects meaningful growth from 2025, with participation expanding to seven additional states and 24 more meetings conducted—demonstrating the increasing strength and reach of our advocacy community.
Our advocacy efforts this year focused on advancing Angelman syndrome (AS)-specific federal funding and direction through the fiscal year (FY) 27 appropriations process. We urged Congress to include appropriations report language to:
Continue to include Angelman syndrome as an eligible condition for the Department of Defense (DOD) Peer Reviewed Medical Research Program (PRMRP). Continued inclusion will sustain critical research funding and support progress toward treatments.
Urge the Food and Drug Administration (FDA) to use the experiences shared by patients and caregivers through the Patient- Focused Drug Development (PFDD) meeting and Voice of the Patient report when reviewing new treatments, and to recognize that even small gains in communication, mobility, or self-care can be life changing.
Urge the National Institute of Neurological Disorders and Stroke (NINDS) to fund natural history studies and real-world data collection to better understand the disease and accelerate therapy development.
Urge the National Center for Advancing Translational Sciences (NCATS) to continue to fund gene-targeted and gene editing research in Angelman syndrome that is currently underway.
A key success this year was the significant increase in congressional support for our House appropriations letter. We doubled our sign-ons from 14 offices last year to 28 offices signing the letter this year, reflecting growing bipartisan awareness and commitment to advancing research and treatments for Angelman syndrome. This progress underscores the effectiveness of sustained engagement and the power of our advocates’ voices.
Our Advocacy Day efforts were further supported by a coordinated Action Alert campaign, which enabled advocates nationwide to engage directly with their members of Congress and reinforce our policy priorities. This combination of in-person meetings and digital advocacy continues to be a powerful strategy in elevating our message and driving impact.
Our 2026 State Advocacy Efforts
In addition to federal advocacy, we expanded our efforts at the state level by successfully securing proclamations recognizing International Angelman Day (IAD). These proclamations help raise awareness and reinforce the importance of continued investment in research and care for the Angelman syndrome community across the country. It also is an opportunity for advocates to initiate or continue to foster a relationship with their representative, to help amplify advocacy efforts in other areas at the local level, such as Medicaid.
Currently, in light of decreasing federal funding and other budget constraints, a major development right now at the state level is that states are changing their Medicaid programs. Medicaid is essential in supporting the care of individuals with Angelman syndrome, providing critical assistance to families nationwide. For many families, Medicaid helps cover the services and supports that the individual needs in order to remain at home or in community-based settings.
To help advocates build on the success of state proclamations and impress upon lawmakers the importance of Medicaid coverage for our families, ASF and FAST are hosting a webinar on April 28th at 8pm EST.
Please see this fact sheet for more information about Medicaid and AS
What Comes Next With Our Federal Asks?
Congress is now in the midst of the FY2027 appropriations cycle. We have made our requests ahead of the House and Senate deadlines.. In the coming months, House and Senate appropriators will begin drafting their respective funding bills and accompanying report language, where our Angelman syndrome-specific priorities can be included. This will be followed by committee markups and continued negotiations between the chambers. Throughout this process, there will be key opportunities to engage with congressional offices and appropriations staff to reinforce our requests.. We will continue working closely with our congressional champions and engaging offices to ensure Angelman syndrome remains a priority as funding decisions move forward. The current deadline to fund agencies FY2027 is October 1 when the new fiscal year begins, but it is quite possible that Congress pushes that deadline until December or early next year. We will keep everyone posted on progress!
Lastly, we have been encouraging researchers to be prepared for the upcoming release of fiscal year (FY) 2026 Peer Reviewed Medical Research Program (PRMRP) applications for research funding for AS so they may apply as soon as the opportunity becomes available.
Our advocacy does not end with Advocacy Day. We will continue to keep the community informed of opportunities to engage and take action throughout the year as we work together to drive meaningful progress for individuals and families affected by Angelman syndrome.
Save the Date!
Join us next year for the 2027 Angelman Syndrome Congressional Advocacy Day in Washington, DC, which will be Wednesday and Thursday, March 10-11, 2027.