Brooke Eby, the beloved activist who documented her battle with ALS for millions of people online, has died. She was 37. Eby’s longtime advocacy partner group ALS Network announced the news on Oct. 1.
“Brooke changed the way people see ALS, but she also changed the way people living with ALS find and support one another,” said Sheri Strahl, president and CEO of the ALS Network. “She brought humor into incredibly difficult moments, spoke with fearless honesty, and created connection where it was desperately needed. We are heartbroken by her passing and profoundly grateful that we had the privilege of knowing her, working alongside her, and celebrating her. Brooke’s impact will live on in every person she reached and throughout the community she created.”
Eby is best known for her advocacy and fundraising surrounding ALS awareness and research. She was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, four years ago. The degenerative disease attacks the motor neurons of the brain and spinal cords. According to the Mayo Clinic, the disease is fatal, with patients experiencing a life expectancy of two to five years once symptoms start. The most common ALS cases occur in people who are 60 or older. Eby was 33 when she was diagnosed.
It was a death sentence. But rather than focus on the time she had left, Eby dedicated her remaining years to teaching as many people as possible about ALS. On TikTok, where she had over 300,000 followers, Eby used humor and wit to document her deterioration. Sometimes this looked like taking her medicine with a beer bong, other times it looked like being frank about the emotions she had when she failed a breathing test, used to track the strength of her respiratory system.
“You could read an infographic about how one in 400 people will get this disease, and you have two to five years to live, but that’s not something that tugs at the heart. So I was like, ‘I’m just gonna do the ‘show don’t tell’ method,’” Eby told Rolling Stone in 2025. “I would rather people see and connect with me and that way they have a dog in this fight. I want people to say, ‘Oh this girl I know has ALS,’ even though it’s through a screen. I could be your friend, your sister, your daughter. And so that way as people are tracking my progression, they’ll be pissed at ALS and the lack of [clinical] progress.”
Eby started ALS Together, a Slack channel for people diagnosed with ALS to talk, mourn, and connect. In June 2026, the ALS Network awarded her with the Dean and Kathleen Rasmussen Advocate of the Year Award.
“People are always talking about legacy and whatever. I don’t really care,” she told Rolling Stone, laughing. “All I really care that people remember is someone like me could get this disease, and that it took me as quickly as it did. As long as when they hear the word ALS, they can picture a face, whether it’s mine or someone else’s. I can’t be embarrassed once I’m dead.”
Daniel D`Amico for SANREMO.FM
