On March 7, 2024, Angelman syndrome advocates from around the United States met in Washington, D.C. for the Inaugural Angelman Syndrome Congressional Advocacy Day.
In preparation for the event, ASF, FAST and our partners, Faegre Drinker and Soapbox, led a comprehensive training to prepare the advocates for the day on the hill the evening prior.
As the historic day kicked off on Thursday, a total of 65 advocates representing 25 states and Washington D.C. migrated to Capitol Hill to meet with their Members of Congress. A total of 111 meetings were scheduled between the Senate and House offices. During each meeting, the advocates took the opportunity to educate their representatives on their personal experiences with Angelman syndrome to accomplish one of our inaugural goals of building relationships and bringing awareness to AS.
The second goal was for the advocates to leave each meeting asking for the same 3 things:
Have Angelman syndrome listed as an eligible condition in the Department of Defense peer-reviewed medical research program;
Push the FDA to include more sensitive outcome measures, growth scale values, and expanded research on clinical endpoints and biomarkers;
Have the NIH convene stakeholders to prepare a roadmap for clinical outcome measures and biomarkers for Angelman syndrome.
For most participants, this was the first time they have lobbied on the hill, which created some nervousness for many.
As the day progressed and advocates had another meeting under their belts, things started to feel more comfortable and everyone left with a sense of accomplishment.
ASF and FAST are so proud of everyone who participated. Ryan and Amanda both understood that the advocates made sacrifices to come to Washington, DC and truly appreciate the dedication and efforts they put forth. The team from Faegre Drinker agreed stating, “In over three decades of federal policy work, the Angelman community’s Capitol Hill day stands out as one of the most poised, passionate, and impactful advocacy launch events. That combination behind a focused agenda is a powerful mixture!”
If you are interested in joining us in the future, please email Ryan at ryan@cureangelman.org or Amanda at amoore@angelman.org for more information.