Brooke Eby, who turned her diagnosis of amyotrophic lateral sclerosis into a running, funny and often blunt account of life with the disease for millions of followers on TikTok and Instagram, died of ALS on Thursday. She was 37.
Ms. Eby, of Maryland, was diagnosed in 2022 after years of testing and went on to raise more than $1 million for ALS research. News of her death was confirmed by the ALS Network, an advocacy group she worked with, in a tribute posted Thursday.
“Millions came to know Brooke through her social media presence, where she offered an unfiltered window into living with ALS,” the ALS Network wrote. “She could explain a devastating reality, challenge a misconception, and make people laugh, sometimes all in the same post.”
Ms. Eby first noticed something was wrong at 29, when she developed a limp on her left side that she assumed was an exercise injury. It took years of tests before doctors gave her a definitive diagnosis of ALS, also known as Lou Gehrig’s disease. The disease attacks nerve cells in the brain and spinal cord, stealing muscle movement and eventually causing paralysis and death. It has no cure, and life expectancy after diagnosis is generally two to five years.
“They tell you that you are going to go paralyzed, you’re going to lose the ability to move, to talk, to swallow, to breathe, all of it,” she said in one of her most-watched videos, telling her story while applying makeup. “So that day sucked.”
She spent two months in bed afterward, she said, eating a pack of M&M’s a day. The turn came at a friend’s wedding, where she was a bridesmaid using a walker and wearing a dress she described as “way too tight because of all the M&M’s.” She wanted to leave; a friend told her, “Or, we can make this really fun.” Within half an hour, the bride was limboing under the walker and Ms. Eby was giving guests what she called walker rides. The scene became one of her first posts about the diagnosis.
“That was the point where I was like, ‘OK, we gotta live life in dog years here,’” she said. “If I’m going to live two to five years, we’ve got to make every one of those years worth seven.”
Her videos covered clinic visits, time with friends and family and the steady deterioration of her body. In one of her last posts, dated Sept. 3, she appeared in a wheelchair with a ventilation mask over her nose and talked about how hard speaking had become. The title was “Loosh lipsh.”
Off camera, Ms. Eby raised money for ALS organizations and started a peer-to-peer network for people with the disease and their caregivers, according to Target ALS, an American medical research foundation. The foundation said in July 2025 that she had raised more than $1 million for ALS research. “She poured herself into this cause,” the group said in its own tribute.
Part of her audience’s pull, she believed, was that she did not match the usual picture of the disease. “Personally, I always associated this disease with older men,” she wrote in an essay for People magazine in 2025. “That makes it easier to look away and be like, ‘That’s not my problem.’ But I could be someone’s daughter, sister, mom, girlfriend, wife.”
“My TikTok presence will live on after I die,” she wrote, “so I hope it serves as a visual diary for anyone who gets diagnosed and needs a guide.”