Brooke Eby, the social media personality who documented her life with ALS in candid, often humorous posts, has died at 37. She is being remembered for confronting the disease with “fearless honesty.”
Eby was 33 when she was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. As her condition progressed, she built a substantial online audience by sharing her experiences openly.
The ALS Network announced her death on Thursday, describing Eby as an “extraordinary advocate, storyteller, community builder, and friend” whose honesty, humor and determination reshaped how countless people viewed ALS.
“Millions came to know Brooke through her social media presence, where she offered an unfiltered window into living with ALS,” the organization said in a statement.
“She could explain a devastating reality, challenge a misconception, and make people laugh, sometimes all in the same post.”
Over four years of living with the condition, Eby attracted hundreds of thousands of followers on TikTok and Instagram.
In her final post, she shared clips of herself modeling trousers from her Silverts collection.
Hundreds of followers have posted tributes beneath the video. One wrote: “I like to think that Brooke is now in her best party outfit and high heels, cocktail in hand, in the centre of the dance floor of the Big Club in the Sky. Rest easy Brooke. For her friends and family my heart goes out to you all.”
Brooke Eby died on Thursday following her battle with amyotrophic lateral sclerosis (ALS). She built an online following by documenting her journey. Source: Brooke Eby/Facebook
Eby was diagnosed at 33, four years before her death. The ALS Network called her an “extraordinary advocate, storyteller, community builder, and friend.” Source: Brooke Eby/Facebook
Eby chronicled the progression of ALS and founded ALStogether to help connect people in the community. Source: Brooke Eby/Facebook
Another follower wrote: “Rest in peace Brooke. You’ve changed lives forever, I will NEVER forget you and your spirit. I love you.”
Sheri Strahl, president and CEO of the ALS Network, said Eby had “changed the way people see ALS.”
“Brooke’s impact will live on in every person she reached and throughout the community she created,” Strahl added.
As part of her advocacy work, Eby founded ALStogether, a platform designed to connect people navigating the disease with one another.
In June, the ALS Network honored her community leadership with the Dean and Kathleen Rasmussen Advocate of the Year Award.
Accepting the award, Eby said: “I didn’t choose ALS, but I did choose to get loud, and be irreverent about it, so don’t worry, I’m not getting quiet anytime soon! I’m so grateful for this award because it tells me I’m helping in my own weird way.”
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Eby had previously spoken about experiencing symptoms for four years before receiving her diagnosis.
She first became concerned at 29, when tightness in her calf caused her to limp.
At the time, Eby had recently relocated from San Francisco to New York City and was working in corporate technology sales at Salesforce.
Her sister and brother-in-law, who are both doctors, speculated that the tightness could be a pinched nerve.
Brooke Eby was diagnosed with amyotrophic lateral sclerosis (ALS) the most common form of motor neuron disease, in 2022, three years after experiencing her first warning signs of the condition. Source: Instagram – @limpbroozkit
Eby opened up about first experiencing symptoms at the age of 29. She was working at Salesforce and had just moved to New York. Source: Brooke Eby/Facebook
Eby continued to undergo tests until 2020, when her doctors considered ALS. The tests came back clear until March 2022, when her right leg showed signs of progression.
‘When I was diagnosed with ALS, I took some time to be sad. For the first two months after I was diagnosed, there was nothing light-hearted about my reaction,’ she wrote in a personal essay for People in 2025.
‘I was in shock. After that decisive doctor appointment, I crawled in bed and miserably wondered what to do next. What could possibly distract me from this?’
She recalled feeling embarrassed after her diagnosis when she attended a wedding with a walker.
Instead of leaving early, one of her best friends convinced her to stay and find the humor in it.
Eby wrote that even though she was ‘matching the bride’s grandma,’ her walker was a ‘total hit,’ and everyone on the dance floor had fun with it.
‘The wedding taught me early on that everyone was a lot more comfortable with my situation when I was laughing, and that came back around to make me feel more comfortable too,’ she said.
She then launched her social media pages, posting about her dating life, taste-testing medication, and ‘get ready with me’ videos.
Eby started one of her most popular videos by candidly telling her followers, ‘Let’s get ready while I tell you how I got a death sentence before my 30th birthday.’
In her 2025 essay, Eby wrote that she hoped her TikTok presence would live on after her death, adding, ‘I hope it serves as a visual diary for anyone who gets diagnosed and needs a guide.’