Internet star Brooke Eby, who gained prominence for speaking with 'fearless honesty' about her battle with ALS, has died at the age of 37.

Eby was diagnosed with amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease, at 33 years old and developed a following online as it progressed. 

The ALS Network announced her death on Thursday, praising Eby for being: 'An extraordinary advocate, storyteller, community builder, and friend whose honesty, humor and determination changed how countless people understood ALS.' 

'Millions came to know Brooke through her social media presence, where she offered an unfiltered window into living with ALS,' the network said in a statement. 

'She could explain a devastating reality, challenge a misconception, and make people laugh, sometimes all in the same post.'

Through her four-year journey with the condition, Eby gained a following of hundreds of thousands of people across TikTok and Instagram. 

In her last post, she shared clips of herself posing in pants from her Silverts collection. 

Hundreds of her followers have already commented tributes on the post, with one writing: 'I like to think that Brooke is now in her best party outfit and high heels, cocktail in hand, in the center 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.' 

'Rest in peace Brooke. You’ve changed lives forever, I will NEVER forget you and your spirit. I love you,' another wrote. 

Sheri Strahl, the president and CEO of ALS Network, said Eby 'changed the way people see ALS.' 

'She brought humor into incredibly difficult moments, spoke with fearless honesty, and created connection where it was desperately needed,' Strahl added.

'Brooke’s impact will live on in every person she reached and throughout the community she created.'

During her online advocacy, Eby founded ALStogether, which connected people navigating the disease.

In June, ALS Network awarded her the Dean and Kathleen Rasmussen Advocate of the Year Award for her community leadership. 

'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,' she said when she accepted the honor. 

Eby previously opened up about experiencing symptoms for years before she was diagnosed. 

She first noticed something was wrong at 29 when she began experiencing tightness in her calf that 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, who are both doctors, first speculated that the tightness could be a pinched nerve. 

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 said.

Eby 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.'