Registration Now Open: 2025 AS Congressional Advocacy Day
March 4-5, 2025 | Washington, DC
Frequently Asked Questions
Please email ASPFDD@angelman.org if you cannot find an answer to your question.
Parents of individuals living with Angelman syndrome, as well as grandparents, aunts, uncles, siblings, and friends. We also welcome clinicians and researchers - Anyone can be a good advocate!
Please be sure to book your hotel:
- The deadline to book a room is February 4th.
- Please click here to book a room at the Washington Marriott Capitol Hill, the preferred hotel for event attendees.
- If you have other accommodations that work for you, please do take advantage of those.
Please be sure to book your travel:
- The closest airport to the hotel is Ronald Reagan Washington National Airport (DCA).
- You should arrive in DC in time for the training that starts on March 4th at 3 pm ET. Once registration is complete, we will provide a detailed schedule. You can schedule your flight out on March 5th to depart after 5 pm ET - if you need to schedule an earlier flight home, it's not a problem; please indicate that on your registration or email us those details.
Congressional Advocacy Day on Capitol Hill can be a busy and potentially overwhelming experience with a lot of walking, meetings, and interactions in a fast-paced environment – for everyone. So deciding on whether to bring your loved one living with Angelman syndrome and/or their sibling(s), is a personal decision for each family.
Siblings and individuals living with AS joining the meetings can have a huge impact. Their presence can help legislators and staff truly connect with the reason we’re advocating—it makes the mission very real.
If you think that your child can tolerate these kinds of settings and you feel comfortable managing their needs during the day while focusing on the meetings, having them there can be incredibly impactful.
That said, it’s equally okay to decide not to bring them. Your ability to focus on the advocacy conversations and share your story might be easier without the additional demands of caregiving in a new environment. Families are welcome to bring a dedicated caregiver, having them join you at training and on Capitol Hill as an added support system for your family.
If you are considering this as a family, please see the Caregiver Information Guide for more information before registering.
Click here for a full list of FAQs
About Congressional Advocacy Day
The History
Initial Wins as of August 2024
Initial Wins as of August 2024
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.
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.
Initial Wins as of August 2024
Initial Wins as of August 2024
Initial Wins as of August 2024
Thanks to the efforts of our amazing AS advocates earlier in the year, FAST and ASF were proud to announce that we have achieved initial success in our fiscal year (FY) 2025 congressional appropriations requests.
Following the inaugural Angelman syndrome congressional advocacy day in March, FAST and ASF formally submitted their appropriations requests to 95 offices following advocate meetings on the hill. From there, the requests were brought to the appropriate appropriations subcommittee by allies like Representatives Troy Balderson (R-OH), Lloyd Doggett (D-TX), Angie Craig (D-MN), Veronica Escobar (D-TX), Brad Schneider (D-IL), and Jeff Van Drew (R-NJ). House and Senate Appropriations Committees and Subcommittees, led by Senators Patty Murray (D-WA), Susan Collins (R-ME), Representatives Tom Cole (R-OK), Rosa DeLauro (D-CT), and Betty McCollum (D-MN) heard our calls for action. Read More
At a Glance
A PDF that has information about Angelman syndrome, why we need research funding, and who FAST and ASF are.