It has been a busy and productive spring for our Hope in Action advocacy efforts. We are excited to share significant progress on our congressional appropriations priorities, with key Angelman syndrome priorities successfully included in House FY27 appropriations reports. Alongside these advocacy wins, we have continued to keep families and advocates informed on the evolving Medicaid landscape and build momentum for policies and investments that support the Angelman syndrome community.
Current status of AS priorities
We are thrilled to share positive news from Capitol Hill - we are making progress on our core advocacy asks from hill day. All of our Angelman syndrome priorities were included in the House versions of the FY27 appropriations reports! The House Agriculture/FDA report, which passed the House in early June, encourages the FDA to utilize patient experience data in regulatory decision-making and recognize meaningful improvements that matter to individuals with Angelman syndrome and their caregivers. The House Labor, Health and Human Services (HHS) report, which passed out of committee last week, includes Angelman syndrome report language at both the National Institute of Neurological Disorders and Stroke (NINDS) and the National Center for Advancing Translational Sciences (NCATS). The language highlights the importance of natural history studies, real-world evidence, long-term follow-up, and continued investment in gene-targeted and gene-editing research. We encourage you to take a look and see the language in print! The NINDS language can be found on page 111, and the NCATS language can be found on page 133 of the House Labor-HHS report.
Another highlight this spring was our webinar, Understanding Medicaid Policies and Politics: How to Advocate for What Our Community Needs, held on April 25, 2026. The webinar provided families and advocates with an overview of the current Medicaid landscape, ongoing policy discussions in Congress, and ways to effectively engage in advocacy efforts. As Medicaid remains a critical source of healthcare coverage and support services for many individuals with Angelman syndrome, staying informed and engaged is more important than ever. A recording of the webinar is available here.
Advocacy Results in Action
We are also excited to announce that the FY26 DOD Angelman Syndrome Grant Opportunity that you advocated for is now open. This opportunity was made possible because of your advocacy efforts in 2025! These grants support innovative research that advances our understanding of Angelman syndrome and helps accelerate the development of meaningful treatments and potential cures. We encourage researchers and members of the community to learn more and share this opportunity with interested colleagues. Additional information and application materials are available here.
Save the Date
Looking ahead, we are excited to announce that Hope in Action’s Advocacy Day will return to Washington, DC on March 11, 2027. Advocacy Day brings together families and supporters from across the country to share their experiences and help educate policymakers about the needs of the Angelman syndrome community. Whether you have participated before or are considering joining for the first time, we hope you will save the date and join us.
These accomplishments reflect the power of advocacy and the collective efforts of families, self advocates, researchers, clinicians, and supporters across the Angelman syndrome community. Thank you for continuing to raise awareness, share your stories, and help drive progress. Together, we are ensuring that the needs of the Angelman syndrome community remain a priority and that momentum continues to build for the future.