Brooke Eby, Beloved TikTok Star and ALS Activist, Dead at 37
Friends, family, and followers remember her as a defining voice in ALS awareness.
Brooke Eby, the beloved activist who documented her battle with ALS for millions of people online, has died. She was 37. Eby’s longtime advocacy partner group ALS Network announced the news on Oct. 1.
“Brooke changed the way people see ALS, but she also changed the way people living with ALS find and support one another,” said Sheri Strahl, president and CEO of the ALS Network. “She brought humor into incredibly difficult moments, spoke with fearless honesty, and created connection where it was desperately needed. We are heartbroken by her passing and profoundly grateful that we had the privilege of knowing her, working alongside her, and celebrating her. Brooke’s impact will live on in every person she reached and throughout the community she created.”
Eby is best known for her advocacy and fundraising surrounding ALS awareness and research. She was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, four years ago. The degenerative disease attacks the motor neurons of the brain and spinal cords. According to the Mayo Clinic, the disease is fatal, with patients experiencing a life expectancy of two to five years once symptoms start. The most common ALS cases occur in people who are 60 or older. Eby was 33 when she was diagnosed.
My diagnosis story #grwm #diagnosis #terminalillness #als
It was a death sentence. But rather than focus on the time she had left, Eby dedicated her remaining years to teaching as many people as possible about ALS. On TikTok, where she had over 300,000 followers, Eby used humor and wit to document her deterioration. Sometimes this looked like taking her medicine with a beer bong, other times it looked like being frank about the emotions she had when she failed a breathing test, used to track the strength of her respiratory system.
“You could read an infographic about how one in 400 people will get this disease, and you have two to five years to live, but that’s not something that tugs at the heart. So I was like, ‘I’m just gonna do the ‘show don’t tell’ method,’” Eby told Rolling Stone in 2025. “I would rather people see and connect with me and that way they have a dog in this fight. I want people to say, ‘Oh this girl I know has ALS,’ even though it’s through a screen. I could be your friend, your sister, your daughter. And so that way as people are tracking my progression, they’ll be pissed at ALS and the lack of [clinical] progress.”
Trending Stories
Trump Explodes on Reporter: ‘You Haven’t Asked Me One F-cking Positive Question’
Macklemore Says ‘Free Palestine’ Tour ‘Sold Out Immediately’: ‘Art Will Always Be a Form of Resistance’
A 58-Year-Old Adopted Man Just Met His Biological Father: Michael McDonald
Sean Combs Placed in Solitary Confinement After Cushy Prison Perks Revealed
Editor’s picks
The 250 Greatest Albums of the 21st Century So Far
The 100 Best TV Episodes of All Time
The 500 Greatest Albums of All Time
100 Best Movies of the 21st Century
Eby started ALS Together, a Slack channel for people diagnosed with ALS to talk, mourn, and connect. In June 2026, the ALS Network awarded her with the Dean and Kathleen Rasmussen Advocate of the Year Award.
“People are always talking about legacy and whatever. I don’t really care,” she told Rolling Stone, laughing. “All I really care that people remember is someone like me could get this disease, and that it took me as quickly as it did. As long as when they hear the word ALS, they can picture a face, whether it’s mine or someone else’s. I can’t be embarrassed once I’m dead.”
Lindsay Clancy Lawyer’s Bid to Find Her Not Guilty After Mistrial Denied: Judge
Courts and Crime
Charisma Madarang
Why Does a ‘South Park’ Writer Want to Take Down the Cornell 7?
Mary Jane Gibson
Three of His Wives Died Mysteriously. Did Thomas Randolph Kill Them?
Lindsay Clancy’s Lawyer Argues for Not Guilty Verdict: ‘Where Is the Evidence That She Did This?’
Courts and Crime
Jon Blistein
I’ve Worked in AI for a Decade. Here’s Why I’m Not Scared of It
Rumman Chowdhury
Go to PMC.com
Most Popular
Fiona Lowe, Daughter of Chad Lowe and Kim Painter, Dies at 13
'Dancing With the Stars' Caps Yacht Rock Night With a Shock Elimination: See the Scores, Who Went Home
Chicago Cubs Win Wrigley Field Rooftop Lawsuit
Chad Lowe Shares Heartbreaking Details About His 13-Year-Old Daughter's Death
You might also like
‘Celebrity Traitors’ Star Richard E. Grant Accidentally Reveals He’s a Traitor to Cast in Premiere, Calls It the ‘Biggest Mistake I’ve Made in My Life’
3 hours ago
'I Am Jane Doe' Social Media Trend Showing Solidarity with Cornell Rape Accuser Takes Off
3 hours ago
Gerard Darel and Merci’s New Collab Is a Family Affair
‘Cameron Winter at Carnegie Hall’ Review: PTA’s Spellbinding Concert Doc Is a Gorgeously Tender Performance
6 minutes ago
Belichick’s UNC Staff ‘Inadvertently’ Signed Termination Releases Early
Rolling Stone is a part of PMX Global, LLC, a subsidiary of Penske Media Corporation. © 2026 Rolling Stone, LLC. All rights reserved.
