When Brooke Eby was diagnosed with ALS in 2022 at the age of 33, it was more than a medical moment, it was a personal earthquake. “I thought I had a whole life ahead of me,” she said. “But instead all I heard was that there are only a couple of treatments available and they aren’t wildly effective.”
For many, the diagnosis might have meant retreating into silence. But Brooke did the opposite. She turned to storytelling. Then she built a movement.
Turning Pain into Purpose
Brooke’s decision to speak publicly about her journey with ALS wasn’t immediate. It took time, and as she put it, “a lot of support.” But once she began sharing her experience on social media, her authenticity, wit, and willingness to show the rawness of life with ALS struck a chord. What began as an outlet quickly became a platform.“I started sharing my story, hoping it would capture attention for the disease,” Brooke said. The results have been nothing short of extraordinary. Her community has grown rapidly, and so has her impact. From viral videos to national media coverage, she has helped humanize ALS in a way that data alone never could. To date, Brooke’s instagram has 260k followers.
In Dan We Trust
This year, during ALS Awareness Month, Brooke raised money for Target ALS; the third year in a row that she has raised funds during the month of May. Her reason? “In Dan we trust,” she laughed, referring to Dan Doctoroff, founder of Target ALS, who is also living with the disease.
“It seems like Target ALS has created a ton of momentum and is doubling down on some really interesting research,” she said. “It’s easy to lose hope when you have ALS, but knowing that people like Dan are behind an organization that aims to help us makes me hopeful.”Brooke has now raised over $1 million for ALS research, leveraging the power of her voice and her community to move the needle. But for her, the message goes beyond dollars. As she shared in her personal essay in People Magazine earlier in 2025, “I have ALS at a relatable age. Personally, I always associated this disease with older men. That makes it easier to look away and be like, “That’s not my problem.” But I could be someone’s daughter, sister, mom, girlfriend, wife. I think people see me and it’s a little more real. It’s more like a shock to the system, and then they start caring more.”
Why Storytelling Matters
In a landscape where ALS research has historically struggled with underfunding and lack of visibility, Brooke’s story is a potent reminder that storytelling isn’t just advocacy, it’s action. It helps change perceptions, drive donations, and rally momentum toward a future where ALS is better understood, diagnosed earlier, and treated more effectively.
“In many ways, the people I’ve met in support groups have also made it possible for me to do what I do online and talk about ALS. At the beginning of my journey, I had basically resolved to never speak to people again. I didn’t want to have to keep going through the experience of sharing all the details and having people pity me. It was too uncomfortable. Then I remember one girl in my support group told me that if I didn’t want to share my story, I could just share hers instead. My whole perspective kind of flipped after hearing that. She had no ego about it at all. She didn’t care about anyone’s reaction. I realized that she was just sharing her story because she thinks it’s important and because it might help someone to hear it.”
Join the Movement
At Target ALS, we’re proud to stand beside advocates like Brooke; people who are not only living with ALS but leading change. Their courage fuels our mission. Their voices shape our path. And their stories remind us: the future of ALS research is personal, urgent, and worth every ounce of effort.
