Overview
- The ALS Network announced on Thursday that Brooke Eby died at 37 from complications of amyotrophic lateral sclerosis, the organization called her an extraordinary advocate and community builder.
- Eby was diagnosed with ALS in 2022 at age 33 and two months later began posting candid videos that grew into a large following on TikTok and Instagram.
- She used humor to document living with ALS and to press for faster research, repeatedly urging policymakers, scientists and donors to “operate at the speed of ALS.”
- Outside social media she founded the nonprofit ALStogether and worked with adaptive-clothing maker Silverts on the B. E. Collection, with some proceeds directed to Team Gleason.
- Her public archive, nonprofit and fundraising partnerships are expected to remain resources for people with ALS and to sustain calls for funding and research that she championed.