ALS community mourns Brooke Eby, who shared her journey with millions
Her social media posts brought honesty and humor to ALS battle
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Brooke Eby, who started ALStogether, died on Oct. 1. (Courtesy of Lisa Helfert Photography)
- The ALS community is mourning the passing of advocate Brooke Eby, who died Oct. 1.
- Eby shared her ALS battle with millions through social media.
- Through her storytelling, she helped to raise awareness about the disease.
The amyotrophic lateral sclerosis (ALS) community is mourning Brooke Eby, an ALS advocate who documented her life with the disease on social media and helped build an online community for people living with ALS. Eby died Thursday, Oct. 1, at age 37.
Eby was diagnosed with ALS in March 2022 at age 33, after a four-year journey that began with a limp she initially attributed to a hard workout. The diagnosis left Eby devastated, and she later said she spent the next two months in bed.
However, she eventually made the choice to share her experiences publicly on social media, opening up about her life with the disease with honesty, humor, and courage. Her posts reached millions, and through her storytelling, she helped to raise awareness about ALS and the challenges faced by people with the disease.
“Brooke made ALS impossible to ignore, and she made it impossible not to love her while she did it,” Calaneet Balas, president and CEO of the ALS Association, said in a press release. “She gave this community her honesty, her humor and her whole heart. We will honor that gift in everything we do.”
Eby founded community hub ALStogether
Eby also founded the virtual ALS community hub ALStogether, which started as a Slack channel and has grown into a vibrant community of ALS patients and caregivers. ALStogether is now a part of the ALS Network, offering a place for people with ALS to ask questions, share stories, and simply be themselves.
“Brooke changed the way people see ALS, but she also changed the way people living with ALS find and support one another,” Sheri Strahl, president and CEO of the ALS Network, said in a press release. “She brought humor into incredibly difficult moments, spoke with fearless honesty, and created connection where it was desperately needed.”
In addition to building community, Eby used her platform to raise more than $1 million for ALS research.
Brooke changed the way people see ALS, but she also changed the way people living with ALS find and support one another.
Eby has been lauded for her advocacy work by the ALS community. The ALS Association named her an ALS Hero in 2024, and just a few months ago, the ALS Network awarded her the Dean and Kathleen Rasmussen Advocate of the Year Award to recognize her impact.
According to the Network, when Eby learned she’d won the award, she said: “I didn’t choose ALS, but I did choose to get loud, and be irreverent about it, so don’t worry, I’m not getting quiet anytime soon! I’m so grateful for this award because it tells me I’m helping in my own weird way.”
Strahl said that the community is “heartbroken by her passing and profoundly grateful that we had the privilege of knowing her, working alongside her, and celebrating her. Brooke’s impact will live on in every person she reached and throughout the community she created.”
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