Brooke Eby, the TikToker who chose to 'get loud' about ALS, dies at 37

Brooke Eby, the creator who spent recent years showing life with amyotrophic lateral sclerosis (ALS) on TikTok and Instagram, has died at 37 from complications of the disease. Her death was announced on October 2 by the ALS Network, a U.S. patient support organization.

A native of Potomac, Maryland, Eby was diagnosed in March 2022, at 33. Instead of typical influencer content, she used dark humor to talk about losing movement, care routines and the lack of research funding, with some videos topping millions of views. 'I didn't choose ALS, but I did choose to get loud, and be irreverent about it,' she once said.

She also founded ALStogether, a Slack community connecting people living with the disease, which became part of the ALS Network this year. In June she received the organization's Advocate of the Year award, and the group described her advocacy as 'candid, vulnerable, funny, irreverent, and remarkably human.' Followers have flooded her profiles with tributes.