Jacky and Amy from ALS United CT traveled to Washington, D.C. from May 30-31 to participate in the inaugural I AM ALS Community Summit with advocates from across the country. They were joined by long-time advocates Kate and Penelope Curcio, who lost Jerry Curcio to ALS in 2003. Several ALS United organizations, as well as other ALS groups, participated in the 2024 I AM ALS Community Summit, which was designed for advocates and organizations to meet, discuss, and learn from each other about the important issues facing the ALS community and to develop tactics to address these issues.
In addition to Kate and Penny assisting with the I AM ALS flag installation near the Washington Monument designed to raise awareness for ALS, the four held in-person meetings with legislative staff at the offices of Representative Rosa DeLauro, Senator Richard Blumenthal and Representative Joe Courtney. They reviewed budget and policy concerns and expressed their appreciation for the long-time support for ALS by the Connecticut delegates.
There were a plethora of excellent panels throughout the event. Caitlin Peruccio, Senior Policy Advisor to Representative DeLauro, presented during the advocacy panel. Other panels include speakers on Raising Awareness and Funds, Caregiving, Accessibility, and Youth and ALS. All the panels were recorded and can be found HERE.
The I AM ALS Community Summit had 400 in-person and 87 virtual attendees. A total of 65 community members participated in legislative meetings with 41 members of Congress.