Brooke Eby, TikTok’s Candid Voice on ALS, Dies at 37

October 3, 2026 avinashmittal

Brooke Eby, the ALS advocate who showed hundreds of thousands of people what life with the disease really looks like, has died at 37. Known on TikTok and Instagram as “Limpbroozkit,” Eby shared her diagnosis, her decline and her dark sense of humor with a candor that changed how many people understand ALS.

Quick facts: Eby died at age 37 from complications of amyotrophic lateral sclerosis (ALS), according to the ALS Network, which announced her death on October 1, 2026. She was diagnosed with ALS in March 2022, at 33, and began documenting her life with the disease on social media later that year. She also founded ALStogether, an online community for people living with ALS.

Who Was Brooke Eby?

Eby was born on December 22, 1988, according to Wikipedia, and grew up in Potomac, Maryland, as The Banner reported. Before her diagnosis, she was living and working in New York City.

Her ALS began quietly. She noticed symptoms in one leg that made her limp, as NBC Chicago reported, and it took years of appointments and tests before doctors confirmed ALS in March 2022, according to NTD News.

How Brooke Eby Changed the Conversation About ALS

A few months after her diagnosis, Eby began posting about ALS online. Her videos were funny, blunt and deeply human, mixing everyday moments with honest explanations of what the disease was taking from her. She built an audience of hundreds of thousands of followers across TikTok and Instagram, and was profiled by The New York Times in 2025.

Humor was central to how she coped and connected. In a 2023 interview with the “Today” show, she said, as NewsNation reported: “Levity is my superpower.”

She also didn’t hide the hard parts. As her ALS progressed, she shared updates about losing much of her mobility and, in September 2026, about how quickly her speech had declined. That honesty is a big part of why so many viewers, including people newly diagnosed and their families, felt less alone.

ALStogether and Her Advocacy

Beyond social media, Eby founded ALStogether, a Slack-based community where people with ALS and their caregivers could ask questions, share resources and support one another. According to The Banner, the community became part of the ALS Network in 2026. She was also named the ALS Network’s Advocate of the Year, and she spoke publicly about how hard it was to find stylish clothing that worked for people with ALS.

In its statement on her death, ALS Network President and CEO Sheri Strahl said that “Brooke changed the way people see ALS”, adding that she also changed how people living with the disease find and support one another.

What Is ALS?

Amyotrophic lateral sclerosis, also called Lou Gehrig’s disease after the baseball player diagnosed with it in 1939, is a disease of the nerve cells that control voluntary muscles. Here are the key facts from the National Institute of Neurological Disorders and Stroke (NINDS):

Question	What NINDS says
What does ALS affect?	Motor neurons in the brain and spinal cord, which carry signals to the muscles. In ALS, these nerve cells degenerate and die, causing weakness and, eventually, paralysis.
What are the early signs of ALS?	Early symptoms usually include muscle weakness or stiffness. For Eby, it started with one leg and a limp.
What is ALS life expectancy?	Most people with ALS die from respiratory failure, usually within 3 to 5 years of when symptoms begin. About 10% live 10 years or more.
Is ALS inherited?	About 5% to 10% of cases are familial. Most cases have no clear family link.
Is there a cure?	No. Treatments can ease symptoms and support breathing and nutrition, and the drug riluzole has been shown to extend survival by a few months.

Many things can cause muscle twitching or weakness, and most of them aren’t ALS. If you have weakness that keeps getting worse, see a doctor, who can refer you to a neurologist if needed.

Remembering Brooke Eby

Tributes poured in after the ALS Network’s announcement, from fellow advocates to followers who had watched her videos for years. Eby once wrote that her online presence would outlast her: in an essay for People, she said, as E! Online reported, “My TikTok presence will live on after I die.” For the many people she helped feel seen, it already has.