Brooke Eby, the ALS advocate who used TikTok to share life with ALS, died at 37. She had turned that feed into a public window on the disease and a place where patients and caregivers could find one another.
She was diagnosed with ALS at 33. By then, millions had already seen her unfiltered posts, and she had already founded ALStogether, an online peer Slack community built for people navigating ALS and for caregivers who needed real-time connection.
ALStogether and the ALS Network
In 2026, the ALS Network brought ALStogether into the organization, giving the community a formal home inside the same network that had been following Eby’s work. The move kept the peer group tied to the people it was built for, instead of leaving it as a standalone space that could have drifted away from the disease community it served.
In June 2026, the ALS Network gave Eby the Dean and Kathleen Rasmussen Advocate of the Year Award. At the time, she said, "I didn’t choose ALS, but I did choose to get loud, and be irreverent about it, so don’t worry, I’m not getting quiet anytime soon! I’m so grateful for this award because it tells me I’m helping in my own weird way."
Sheri Strahl on Brooke Eby
Sheri Strahl said Eby "changed the way people see ALS, but she also changed the way people living with ALS find and support one another". She also said, "She brought humor into incredibly difficult moments, spoke with fearless honesty, and created connection where it was desperately needed."
That mix of humor and bluntness is what made Eby’s public voice unusual. ALS is devastating, but she kept talking about it in a way that made the disease legible to strangers and made peers feel less isolated.
Brooke Eby’s public window
Her death leaves a gap that is both personal and practical. People who used ALStogether or followed her TikTok presence lost a visible advocate who made the daily reality of ALS easier to see, and the unanswered question now is what specific circumstances led to her death at 37.
For readers living with ALS or caring for someone who is, the immediate takeaway is simple: Eby’s work did not stop at awareness. She built a channel for connection, and the organization that honored her also absorbed that community into its structure.
