Brooke Eby, the internet personality who shared her ALS journey with striking candor, has died at 37. She is being remembered for her “fearless honesty” and determination to raise awareness.
Eby was 33 when she was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. As the condition progressed, she documented her experiences online and built a large, engaged audience.
The ALS Network announced her death on Thursday, describing Eby as an “extraordinary advocate, storyteller, community builder, and friend” whose humor, honesty and resolve transformed 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 the four years she lived with the disease, Eby attracted hundreds of thousands of followers on TikTok and Instagram.
In her final post, she shared videos and photos of herself modeling pants from her Silverts collection.
Hundreds of followers have since left tributes in the comments. 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 after a battle with amyotrophic lateral sclerosis (ALS). She built an online following by documenting her experience with the disease. Source: Brooke Eby/Facebook
Eby was diagnosed at 33, four years before her death. The ALS Network remembered her as 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 affected by the disease. Source: Brooke Eby/Facebook
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Another follower wrote: “Rest in peace Brooke. You’ve changed lives forever, I will NEVER forget you and your spirit. I love you.”
As part of her advocacy work, Eby founded ALStogether, a community designed to connect people living with the disease and those navigating its challenges.
In June, the ALS Network honored her community leadership with the Dean and Kathleen Rasmussen Advocate of the Year Award.
“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,” Eby said while accepting the honor.
Eby had previously revealed that she experienced symptoms for four years before receiving an ALS diagnosis.
She first became concerned after developing tightness in her calf that caused her to limp. Over time, her mobility deteriorated until she needed a wheelchair.
At the time, Eby was living in New York City and working in corporate technology sales for Salesforce.
“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 2025 personal essay for People .
“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?”
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
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