ALS Advocate Brooke Eby Dies At 37 After Courageous Fight

Brooke Eby is dead at 37. An internet star who spoke without fear about her fight with ALS, she passed away on Thursday while millions of followers poured in with emotional tributes. The ALS Network confirmed the news and called her an extraordinary advocate, storyteller, community builder, and friend whose honesty changed how countless people understood the disease.

She was diagnosed at 33 after four years of symptoms. Eby gained a massive following on TikTok and Instagram by offering an unfiltered look at living with amyotrophic lateral sclerosis. She could explain a devastating reality in one post, challenge a misconception in the next, and make people laugh all before she hit publish.

In her final social media update, she shared clips of herself posing in pants from her Silverts collection. Hundreds of followers left comments on that post immediately. 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." Another added, "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 ALS Network, said Eby changed the way people see ALS. Her impact lives on in every person she reached and throughout the community she created. In June, the network awarded her the Dean and Kathleen Rasmussen Advocate of the Year Award for her leadership. When accepting the honor, 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."

The path to her diagnosis was long. Eby first noticed something wrong at 29 when tightness in her calf made her limp. She had just moved from San Francisco to New York City and worked a corporate tech sales job with Salesforce. Her sister and brother-in-law, both doctors, speculated the tightness could be a pinched nerve. Tests continued until 2020, when doctors considered ALS. It was not officially diagnosed until two years later in 2022, by which time her right leg showed signs of progression and she could no longer walk. She documented how the condition progressed over those four years before seeking help for a diagnosis that came too late to stop its advance.

Tests showed no issues until March 2022. That was when her right leg began showing signs of progression. Eby admitted to feeling crushed in the wake of her ALS diagnosis. She told People magazine in 2025 that she allowed herself time to grieve. For the first two months following the doctor's appointment, nothing light-hearted could break through her mood. Shock washed over her completely. After that decisive moment, she crawled into bed and wondered miserably what came next. What possible distraction existed for someone facing this fate?

She felt ashamed after receiving the news while walking to a wedding with an assistive device. A best friend refused to let her leave early. That person convinced Eby to stay and find humor in the situation. Even though she matched the bride's grandma, her walker became a total hit on the dance floor. Everyone had fun watching it. Eby wrote that the event taught her an important lesson early on. She noted that people were much more comfortable with her condition when she laughed. That shared comfort trickled back to make her feel better too.

She quickly launched social media pages. Content included updates on her dating life, medication taste tests, and get ready with me videos. One of her most popular clips started with a candid warning for followers. She said let's get ready while I tell you how I got a death sentence before my 30th birthday. In the same 2025 essay, Eby expressed hope that her TikTok presence would survive even after she died. She added that she hoped it serves as a visual diary for anyone who gets diagnosed and needs a guide.