Brooke Eby, TikToker who used wit and sincerity to educate people about her life with ALS, dead at 37

John Mazerolle · CBC News

· Posted: Oct 02, 2026 2:06 PM EDT | Last Updated: 3 minutes ago

Brooke Eby, a U.S. woman who shared her diagnosis of amyotrophic lateral sclerosis, or ALS, with honesty and humour, amassing millions of views on Instagram and TikTok, has died of the disease at 37.

"Millions came to know Brooke through her social media presence, where she offered an unfiltered window into living with ALS," the ALS Network wrote in a tribute Thursday, the day of Eby's death. "She could explain a devastating reality, challenge a misconception, and make people laugh, sometimes all in the same post."

Eby first realized she had a health problem at age 29, developing a limp on her left side that she initially assumed was an exercise injury. It took years of testing before she was definitively diagnosed in 2022 with ALS, sometimes known as Lou Gehrig's disease.

ALS is a progressive neurodegenerative disease that attacks nerve cells in the brain and the spinal cord, resulting in loss of muscle movement, eventually causing paralysis and death. Life expectancy is generally two to five years. There is no cure.

"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," Eby explained in one of her most popular videos, telling her story as she applied makeup. "So that day sucked."

Eby said she crawled into bed for two months and ate a pack of M&M's a day, until she attended a friend's wedding as a bridesmaid, using a walker and wearing a bridesmaid dress that was "way too tight because of all the M&M's."

Eby as seen in a TikTok post on Jan. 26, 2024. Since beginning to talk about her diagnosis on social media, she amassed millions of views on Instagram and TikTok. (@limpbroozkit/TikTok)

She wanted to leave but a friend said, "Or, we can make this really fun."

Half an hour later the bride was limboing under the walker and Eby was giving people "walker rides" — a turning point in Eby's life that is also one of her earliest posts about her 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."

A life on full display

In her videos, Eby told jokes, answered questions and detailed her life, including trips to medical clinics, moments with friends and family and the deterioration of her body. In one of her last posts, on Sept. 3, in a wheelchair and with a ventilation mask over her nose, she talks about her difficulty speaking. It's called "Loosh lipsh."

Eby in one of her last TikToks, posted on Sept. 3. (@limpbroozkit/TikTok)

Aside from her social media presence, Eby also worked to help further ALS research.

"Whether she was rallying her community and raising money for ALS organizations, taking us inside the life of someone living with ALS, or starting a peer-to-peer network to help people with ALS and their caregivers better navigate this disease, she poured herself into this cause," Target ALS, a U.S.-based medical research foundation, said in a tribute.

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Target ALS said in July 2025 that Eby had raised more than $1 million US for ALS research.

"I have ALS at a relatable age," she wrote in People magazine in 2025. "Personally, I always associated this disease with older men. 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. I think people see me and it’s a little more real. It’s more like a shock to the system, and then they start caring more.

"My TikTok presence will live on after I die, so I hope it serves as a visual diary for anyone who gets diagnosed and needs a guide."