Inaugural Angelman Syndrome Congressional Advocacy Day Round-Up

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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:

  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.

For most participants, this was the first time they have lobbied on the hill, which created some nervousness for many.

"It was definitely out of my comfort zone and more than a bit intimidating, but I am so happy to have been a part of this historical event." -- Dawn M, Delaware, grandmother and legal guardian of Baileigh, who lives with AS

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.

“Last week was such a beautiful experience. At Capitol Hill it was incredibly impactful and moving. I felt so inspired to be surrounded by women that walk the same shoes as I. That understood the agenda and were ready to start a path of advocating yearly. I witnessed the powerful work on the hill being done and I realized that this was just the start for our community. I loved every moment of telling our stories and teaching or state representatives about our kids' rare genetic disorder. Every person was extremely brave and even though I was nervous I put that aside. I felt my son would be so proud of me as I'm proud of him everyday for all the struggles he has to bear. This meant the world to me to be there and I can't wait to walk those halls next year to continue to teach, fight for our kids' needs, and make a change. - Tashia E, mother of Jaylon, who lives with AS.

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 or Amanda at for more information.