Brooke Eby was 33 years old when she was diagnosed with amyotrophic lateral sclerosis (ALS) also known as Lou Gehrig’s disease. She frequently called the illness—which erodes the body’s ability to move, speak, and breathe autonomously while leaving the mind intact—a death sentence, given how little is known about its cause and how to slow or stop its progression. It was announced that she died yesterday at the age of 37.
In many ways her story was typical of those who have the disease: a vague symptom (in her case, a slight limp) was followed by years of searching for a diagnosis, as there had been no history of it in her family (90% of ALS cases are sporadic or completely random). But it was unusual too: She was much younger than the average person diagnosed with ALS. With that came a very millennial approach to living with the illness, using TikTok and Instagram under the handle @limpbroozkit to share her story.
Her first viral video—in which she chugged a notoriously disgusting-tasting medication called Relyvrio through a beer bong—offered a glimpse of her sense of humor. She ironically called it the “Relyvrio Challenge” after the ALS Ice Bucket Challenge. Watching it you weren’t sure whether to laugh or cry.
My father was already two years into his ALS diagnosis when I discovered Brooke online. Her journey largely mirrored my father’s, but up until that point, we had found very little to laugh about. After all there’s nothing very funny about an incurable disease that traps you inside your body. But through Brooke’s videos, we found small bright spots of relief.
Brooke epitomized the cheesy cliché about turning lemons into lemonade. As her following continued to grow, she bared it all on social media—the bad, the ugly, and the uncomfortable—getting the disease an unheard-of level of attention. Once onstage at a fundraiser, she joked: “If a Kardashian got ALS, we would all be saved. The Kardashian Curse would be turned into the Kardashian Cure.”
Outside of her powerful social media presence, Brooke also launched ALStogether, an online space for people with the disease to connect, and worked with Silverts to create a collection of stylish adaptable clothing.
Toward the end of Brooke’s health journey, I had to look away. I knew firsthand exactly how this would end; my dad died over two years ago now, and I’m still reeling from the loss every day. But she continued to share, creating a visual diary of her own devastating decline. If you scroll back through her TikTok, you can watch her learn how to use her wheelchair, see her voice change, and debate whether she wants a feeding tube. She took everybody along for the bumpy ride.
Brooke not only lived an extraordinary life because she was extraordinary, but also because she decided to turn her death sentence of a diagnosis into advocacy. She died on the internet to help find a cure for ALS. Hopefully it happens soon.
Brooke’s family requests that anybody who feels moved by her story to please consider donating to one of these ALStogether or Team Gleason to continue her legacy.
