Brooke Eby, who built a following of millions on TikTok by documenting her life with ALS, died on Oct. 1 at 37. TODAY show co-anchor Savannah Guthrie announced her death on air Oct. 5.
Eby was diagnosed with amyotrophic lateral sclerosis, a progressive and fatal neurodegenerative disease, at 33. She spent the years after her diagnosis sharing her experience online, using humor to reach an audience far beyond the ALS community.
What Happened: Savannah Guthrie Announces Brooke Eby’s Death
Guthrie delivered the news on TODAY, describing Eby’s fight against ALS as remarkable and praising her courage, openness and humor throughout her illness, according to TODAY. She had interviewed Eby in 2023, when Eby appeared on the show to talk about how she chose to face her diagnosis.
During that 2023 appearance, Eby explained the philosophy that shaped her public presence. “Levity is my superpower. And it’s really how I’m bringing my story to the world. I’m trying to use humor and really let ALS be heard,” she said, according to TODAY.
What It Means For Fans Who Followed Brooke Eby’s Journey
Eby’s TikTok videos turned her into one of the most recognizable faces of ALS advocacy online, drawing millions of followers who watched her navigate the disease’s progression with candor and wit. She kept posting even as her condition worsened, giving her audience an unfiltered look at life with ALS rather than retreating from public view.
Beyond her own platform, Eby founded ALStogether, a community built to connect people living with the disease. The project extended her influence past social media into direct support for others facing the same diagnosis.
Background: Brooke Eby’s Mission To Raise Awareness
In a 2023 essay for TODAY.com, Eby was direct about the stakes behind her content. “ALS is very much still a hopeless disease. The scary part is that so much is unknown about why people are affected by it, but if any of my videos can help start conversations to drive awareness, and then drive pressure and resources, then maybe we can find a cure, or a way to make this a livable disease,” she wrote.
That mission, using her own story to push for research funding and public understanding, defined her public work from diagnosis through her final years.
What’s Next
The ALStogether community Eby founded continues to serve people affected by ALS, carrying forward the awareness work she built her platform around. Her TikTok videos remain online, documenting her journey and reaching new viewers discovering her message of humor and advocacy.
Reporting from Today contributed to this story.
Don't stop here
Every Score. Every Story. One Home.
Breaking sports, entertainment and news from across the Total Apex network, updated all day.
Get the Full Story →
