On May 7–10, 2025, representatives from the ALS Network joined other nonprofit organizations at the second annual ALS Community Summit, hosted by I AM ALS in Washington, D.C. This four-day event brought together advocates and community leaders to address the key challenges facing people living with ALS and their families, share knowledge, and develop collaborative strategies to strengthen support across the ALS community.
ALS Network staff and volunteer advocates participated in multiple legislative meetings with Capitol Hill offices to raise awareness and advocate for better access to care and increased federal funding for ALS research. Representing California and Hawaii, the ALS Network served as the primary delegation from both states, meeting with 13 congressional offices, including both members of Congress and their staff.
The second day of the summit began with a speaker series at the fourth annual ALS Awareness Month flag display on the National Mall, where 6,000 flags were planted to represent the 6,000 people diagnosed with ALS each year in the United States. Attendees also participated in workshops on Creative Expression and ALS, and Fundraising with GoFundMe.
Day three featured panel discussions on Legislative Caregiving, The Future of Research, and Advocacy in Uncertain Times.
The event concluded on the fourth day with the first-ever “Our Stories, Our Flags” tour and storytelling event at the flag display. Attendees heard moving stories behind the flags, offering a powerful reminder of the individuals and families impacted by ALS.
The ALS Network extends heartfelt thanks to everyone who joined us—both virtually and in person—for the ALS Community Summit. We are especially grateful to people living with ALS, caregivers, and advocates who continue to stand with us in the search for effective treatments and cures for the disease.
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