TikTok star Brooke Eby dies at 37. What she shared about life, her ALS diagnosis - USA Today

Brooke Eby, who gained hundreds of thousands of followers on social media for sharing her journey with ALS, has died at 37. ALS is an acronym for amyotrophic lateral sclerosis, a terminal neurodegenerative disease also known as Lou Gehrig's disease. 

The ALS Network announced the news on Oct. 1, noting Eby "changed how countless 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," the organization shared on social media.

In an interview with USA TODAY in 2024, Eby shared how her diagnosis has shaped her perspective in surprising − and sometimes even silly − ways.

"I feel like I don't take anything that seriously, even on my work calls," she said. "I've always been kind of like the class clown, but I feel like it's gotten worse since my diagnosis. Because I'm like, 'What are we going to do about it?'"

Here's what else she shared about her life and ALS journey.

When Eby interviewed with USA TODAY in 2024, the then-35-year-old recently moved back in with her parents to her childhood home. The change was born out of necessity. Eby had been living with ALS since March 2022, and it "got to the point where I just couldn't do things by myself anymore," she said. 

For example, she could no longer reach the hot water nozzle in the shower, so her father developed a pulley system for her to use.

"It's just constant adaptation," she said. "But if you have family or support around you, it makes it way, way easier."

Eby said her family was in denial when she was first diagnosed.

"Even during the diagnosis process, I think we were all in – we're just a denial type of family, like, we're not much of like a sit-down-and-talk-about-feelings family," she shared. "So I think we all just went straight into denial, especially before the diagnosis, like we thought every doctor was wrong, we thought everyone was dumb, and we just carried on."

She had accepted it the most since it was happening to her body, she explained, but knew others felt helpless.

"You're just watching someone you love decline and there's nothing you can do," she said. "And it's inevitably going to continue. So you're just like, what do you do? For me I can wake up and be like, all right, I feel fine today. Mentally, I feel good, so let's roll. But I think it's got to be way harder watching it."

Eby was always game for trying new treatments, even though she was skeptical.

"I keep hearing all these success stories, and my mom keeps being like, 'can we just sneak you in to that?' I'm like, we could, but I don't have the gene that it would help. I don't think it would work," she said. That said, she participated in a NIH research study – and really, she'll try anything. "I'll guinea pig as much as they want me to."

"I've already experienced something so many people are terrified of, and I'm still chugging along," she said. "So what else can you do?"

Finding community helped, she said.

"It's obviously a sad community to join, because you make a friend, and there's not a lot of time with that friend, typically." She joined a local support group when first diagnosed full of 70-year-old men, and maybe two other women.

The then 33-year-old pondered, "why did lightning strike me?" She's since met a group of women diagnosed before the age of 35: "It's just nice to see other people your age in your same position, like worrying about the same things."

But she drew the line when it came to dating.

"I'm at the point where I have enough on my plate that I don't want to deal with like a boy's emotions," she laughed. She "can't imagine a boy complaining to me about his day and me being at all supportive. I'd be like, 'shut up.' I don't think I'd be a good partner."