Brooke Eby: An ALS Hero

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Each year, the Association’s Hero Awards recognize special individuals in the ALS community who have made a significant impact for those living with the disease. Their stories of courage and determination in the face of unimaginable adversity are a reminder that heroes aren’t born, but made from the choice to lean into challenges and commit to the greater good.

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Brooke Eby is funny, and she knows it. She freely admits that her default mechanism for approaching just about anything in life is to make jokes about it, including about having ALS. “There's just so many things that I guess I find funny,” she said. “I'm not sure everyone does until I put them in a funny light. But I also think making jokes about it makes people more comfortable asking questions.”

 

I think it's my responsibility to share my story and hopefully people will start caring more. It's such an easy thing to look away from because you're like, ‘I don't want this. I don't want to hear sad news. This isn't happening to me, so I can just turn away.’ But once you see someone like me who could be your daughter or your sister or your friend or your mom, depending on your age, you can start saying, ‘wow, this might actually affect me. So, I'm going to care a little bit more.’”
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Of course, until not that long ago ALS seemed to be about the least likely thing Brooke would need to make jokes about. She was young and healthy, until 2018 when she noticed a slight limp and was having difficulty pushing off her left foot. “It was slapping on the ground, and I assumed it was some sort of workout injury. I was like, ‘wow, I must be really in shape if I am starting to limp from a basic workout,’” she said.

For a long time that was her only symptom, so she held out hope that it was something, anything, but ALS. “I think the combination of my slower progression and the fact that I am younger, a woman, I think all led us to more hope that it wouldn't be ALS,” Brooke said, “but ultimately ALS stopped hiding.” In March of 2022, after visits to many doctors and many tests, she was finally diagnosed with ALS at just 33 years old.

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“When I was diagnosed, the first couple months, I was in such shock it was just survival,” Brooke said. “But as I started coming out of that, I think my natural inclination to making jokes about it just kicked in and I was like, there's so many comical things that happen when you get a diagnosis like this when you're young. Imagine trying to date when you're like, ‘by the way, I'm using a cane now. I might have a wheelchair in a week. Who knows?’”

Since then, Brooke has continued to attack ALS head-on, driving awareness through her large and ever-growing social media channels. Her followers on TikTok number more than 100,000, and on Instagram (@LimpBroozkit), more than 85,000. So far, Brooke has raised nearly $1 million for research through her public appeals.

After I told my close circle of friends, I was like, I really don't want to keep having these conversations anymore. And so, I started toying with the idea of doing it on social media and just I think it's easier somehow to tell 1,000 people versus telling five people individually. It started off as helping me be able to tell people and talk about it. I'm a lot more comfortable talking about it than I was a year ago, but now the goal is really become awareness and really galvanizing people to be eager to help the ALS community.”
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Brooke’s following on social media has allowed her to break through to audiences on more traditional media as well. She has shared her story on NBC’s “Today Show,” on multiple podcasts and blogs, and in “The New Yorker” magazine, always bringing her sense of the absurd and positive outlook on life to help raise awareness and funds for ALS.

“If I make it a little bit lighter, I find that people are more eager to ask questions and to have conversations about it and hopefully carry on conversations outside of just TikTok and Instagram.”

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.

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