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Update: Inaugural AS Congressional Advocacy Day

May 21, 2024

Update: Inaugural AS Congressional Advocacy Day

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:

  1. Have Angelman syndrome listed as an eligible condition in the Department of Defense peer-reviewed medical research program;
  2. Push the FDA to include more sensitive outcome measures, growth scale values, and expanded research on clinical endpoints and biomarkers;
  3. 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).