Brooke Eby, ALS Advocate Who Built Global Community, Dies at 37
Brooke Eby, a Montgomery County resident and prominent ALS advocate, has died at age 37. Diagnosed at 33, she used social media to humanize the disease and founded ALStogether, a peer support network. In 2026, she integrated ALStogether with the ALS Network and received the Dean and Kathleen Rasmussen Advocate of the Year Award. Her legacy includes raising over $1 million for research and reshaping public understanding of ALS through candid, humorous storytelling.
Key points
- Brooke Eby died at 37 after being diagnosed with ALS at 33.
- She founded ALStogether, an online peer community for ALS patients and caregivers.
- In 2026, ALStogether was integrated into the ALS Network to expand its reach.
- Eby received the Dean and Kathleen Rasmussen Advocate of the Year Award in June 2026.
- Her advocacy raised over $1 million for ALS research and shifted public perception of the disease.
Background
Eby’s death follows earlier local coverage noting her status as a TikTok star and community builder in Montgomery County. Her work built upon a broader movement to destigmatize ALS, contrasting with other local news cycles in 2026 such as the West Nile virus outbreak and police leadership changes in the county.
How outlets are covering it
Bethesda Magazine confirms Eby’s death and local ties. The ALS Network emphasizes her institutional impact, noting the 2026 merger of ALStogether with their organization and her June 2026 award. Vogue highlights her strategic use of online chronicles to drive cure research. While all sources agree on her advocacy, the ALS Network focuses on community infrastructure, whereas Vogue emphasizes her media strategy for fundraising and awareness.
Why it matters
Eby’s death marks the loss of a key figure who transformed ALS advocacy from passive awareness to active community building. Her integration of ALStogether into the ALS Network ensures her peer support model continues, potentially improving long-term outcomes for patients through sustained connection and resource access.
What to watch
The ALS Network has pledged to steward ALStogether forward, protecting its unique culture while expanding resources. The organization will continue honoring Eby’s vision to connect patients and caregivers, ensuring her community remains a central part of ALS support infrastructure.
- Montgomery County resident who documented life with ALS dies at 37 Bethesda Magazine
- Remembering Brooke Eby ALS Network
- Brooke Eby, Who Brought Humor and Awareness to A.L.S., Dies at 37 The New York Times
- Brooke Eby Chronicled Her Own Death Online to Find a Cure Vogue
- TikTok Star Brooke Eby Dies at 37 After Sharing Her ALS Journey for 4 Years People.com
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