Beloved TikTok star dies at 37 after documenting ALS battle online

Alabama Life & CultureBrooke Eby during a 2023 "TODAY" appearance.TODAYBrooke Eby, who gained a massive online following documenting her battle with amyotrophic lateral sclerosis, has died. She was 37.Eby died from complications of ALS, also known as Lou Gehrig’s disease. The ALS Network announced Eby’s passing on Thursday, Oct. 1.“We are heartbroken by the passing of Brooke Eby, ALS advocate, storyteller, founder of ALStogether, community builder, and our dear friend,” the organization’s Instagram statement reads. “Brooke changed how people understood ALS. With extraordinary honesty, irreverent humor, and vulnerability, she invited millions into her life and helped people see the person beyond the diagnosis. She made people think. She made people care. And, even during unimaginably difficult moments, she made people laugh.⁣” Eby, a Maryland native, was diagnosed with ALS at age 33 in 2022. There is currently no cure for the fatal neurodegenerative disease, which gradually destroys motor neurons in the brain and spinal cord. Over time, ALS patients lose their ability to walk, speak, swallow and breathe. Eby recalled the story of her ALS diagnosis in a viral 2024 TikTok captioned, “Let’s get ready while I tell you how I got a death sentence.” She began noticing calf tightness and a limp in her left leg when she was 29. Four years after her first symptoms appeared, Eby was diagnosed with ALS and told she had two to five years to live. “I pretty much crawled into bed and ate, like, a pack of M&M’s a day,” Eby said of her initial reaction to the news. A few months later, Eby attended a wedding, where her friend encouraged her to fully embrace the moment instead of leaving early.“Half an hour later, we had the bride limboing under my walker, and I was giving walker rides all over the dance floor,” Eby recalled. “And that was the point where I was like, ‘OK, we gotta live life in dog years here.’”Eby became known for detailing her health struggles with candor, humor and resilience. On Sept. 3, she posted an Instagram video that showcased her increased struggles with speaking.READ MORE: Gypsy Rose Blanchard’s partner dies at 34: ‘Don’t know if it was intentional’“You know what they say, loose lips sink … Brooke’s will to live,” she joked.With nearly 400,000 Instagram followers, Eby used her platform to raise ALS awareness and fundraise for research. She founded ALStogether, an online Slack community for ALS patients to connect with each other. Eby’s many fans and followers are reflecting on her impact in the wake of her death.“This was never going to be easy but Brooke made this journey easier. The humour and determination is, was and will always be a flawless gift given to us with ALS,” one person commented on the ALS Network’s statement. “For it being the death of someone I didn’t know, I am absolutely devastated. I hope Brooke is enjoying eternal freedom from ALS and still cracking jokes on the other side,” another comment read. A third person noted, “Brooke had ALS but ALS did not have her. It did not dim her light, her creativity, her humor, or her charisma. I will miss her amazing stories.”Eby is survived by her parents, Cliff and Nancy Eby, her brother Chris and her sister Sarah. These 9 TV shows were just canceled — here’s why‘Survivor 51’ contestant suffers grisly injury while using macheteJury makes decision in ‘American Idol’ alum’s shocking murder trial ‘Dancing With the Stars’ fans ‘devastated’ by surprising elimination: ‘I’m in genuine shock’Sara Donnellan is a trending entertainment news writer. She worked as a TV news reporter for NJ.com, covering scripted and reality television and other viral TV moments, answering viewers’ burning questions and...