Brooke Eby, Beloved TikTok Star and ALS Activist, Dead at 37

Brooke Eby, a celebrated TikTok icon and passionate ALS advocate, passed away at age 37. The announcement was made by her longtime advocacy partner, the ALS Network, on October 1.

<p class=”paragraph lar v-a-lowriq %28quote 1%29 &lt;em>Rolling Stone</em>

“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.”

Best known for her activism and fundraising campaigns promoting ALS awareness and research, Eby was diagnosed with amyotrophic lateral sclerosis (ALS)—also called Lou Gerhigg’s disease—four years earlier. The neurodegenerative disorder targets muscle‑controlling motor neurons in the brain and spinal cord. According to the Mayo Clinic, ALS is typically fatal, with patients often facing two to five years of survival once symptoms emerge. Most cases arise in individuals aged 60 or older, yet Eby was 33 when she received her diagnosis.

Despite knowing his time was limited, Eby devoted the remainder of his life to education. Using his large TikTok following of over 300,000, he employed humor and wit to chronicle his decline—capturing moments such as taking medicine with a beer bong, or speaking candidly about the emotional weight of failing a breathing assessment that measured respiratory strength.

"show don’t tell. Instead of merely presenting statistics—e.g., one in four hundred people will develop ALS with a two‑to‑five‑year life expectancy—I chose to demonstrate the reality directly,“ Eby explained to Rolling Stone in 2025. "I prefer people to see me and connect with me, believing they have a personal relationship with the condition,&lquer. I wish they felt like friends, sisters, or daughters. If our audience feels such bonds, they will push louder against ALS and accelerate scientific progress.">

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Eby founded ALS Together, a Slack community designed as a space where individuals diagnosed with ALS can converse, grieve, and foster peer support. In June 2026, the ALS Network recognized her achievements by awarding her the Dean and Kathleen Rasmussen Advocate of the Year prize, highlighting her transformative work within the advocacy landscape.

“People obsess over legacy, but I rarely think about that,” she told Rolling Stone, laughing. “What truly matters is that people remember someone like me having the disease—and that it struck as fast. Whenever someone hears the word ALS, they should picture a recognizable face, whether it belongs to me or another individual. I refuse to ever seem shabby posthumously.”

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