Brooke Eby
But Eby, who has no family history of the neurodegenerative disease—which has no cure—took her friends' advice and stuck around. Within a couple hours, the bride was doing the limbo under Eby's walker, and Eby was giving people walker rides all over the dance floor. Everyone was laughing with her, and for the first time, she felt comfortable with her new normal.
Four years later, Eby has more than 400,000 followers across her social media accounts. She's gained that following by posting frank, often laugh-out-loud funny videos about life with a terminal disease. Eby maintains her sunny humor through it all—a 'coping mechanism,' she recognizes, but one that draws people into her world. Some videos have centered on the unique challenges of dating with a terminal illness; others share the adaptive clothing and tools that help her function. In one recent video, Eby declared that she wouldn't wish ALS on anyone—but did wish 'people could have it just for a day.' Her videos are perhaps the best way to drop thousands of strangers into the life of a young person sentenced to death from a disease often associated with, as Eby puts it, 'grandpas.'
Eby also started a patient community, ALStogether, which is a space for patients and caregivers to connect and support one another. 'It's like a virtual headquarters for the ALS community,' she says, and has grown to include more than 1,200 members.
Still, Eby doesn't think of herself as an influencer. 'I see it as a video diary,' she says. 'I'm not doing this for any reason other than to share my story and hope that it gets people connected to ALS.'
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