Brooke Eby, ALS Activist & TikTok Star, Dies at 37, Leaving Legacy of Hope
Brooke Eby, ALS Activist & TikTok Star, Dies at 37, Leaving Legacy of Hope
Remembering Brooke Eby, the witty ALS advocate who used TikTok to bring humor and awareness to the disease. Her powerful message touched millions and sparked vital conversations.
Brooke Eby, the beloved activist and TikTok star who courageously documented her battle with ALS for millions online, has passed away at the age of 37. Her death was announced on October 1st by her longtime advocacy partner group, ALS Network, leaving a profound impact on those she inspired and educated.
Diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, at the young age of 33 in 2022, Brooke was given a life expectancy of two to five years. While the disease is degenerative and typically affects individuals over 60, Brooke faced her diagnosis with an extraordinary resolve to make a difference.
She transformed her personal struggle into a powerful platform for awareness and advocacy, dedicating her remaining years to teaching as many people as possible about ALS.
On TikTok, where she amassed over 300,000 followers, Brooke utilized humor and raw honesty to chronicle her life with ALS. She openly shared her journey, from the everyday challenges to the emotional toll, often with a witty and engaging approach. Her philosophy was to "show, don't tell," believing that personal stories would resonate more deeply than statistics.
I would rather people see and connect with me and that way they have a dog in this fight,
she once told Rolling Stone. "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.” Her candid posts, sometimes showing her taking medicine with a beer bong, other times expressing vulnerability after a failed breathing test, humanized the devastating disease and fueled a desire for progress.
Sheri Strahl, president and CEO of the ALS Network, praised Brooke's unique contribution:
Brooke changed the way people see ALS, but she also changed the way people living with ALS find and support one another. She brought humor into incredibly difficult moments, spoke with fearless honesty, and created connection where it was desperately needed.
Her efforts went beyond social media; Brooke founded ALS Together, a Slack channel that became a vital community for individuals diagnosed with ALS to connect, mourn, and support each other.
Brooke's impactful advocacy earned her significant recognition, including the Dean and Kathleen Rasmussen Advocate of the Year Award from the ALS Network in June 2026. Despite her accolades, her focus remained clear. "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," she stated.
"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.” Her legacy is not just one of awareness but of genuine human connection and a fierce determination to fight for those living with ALS.
