Brooke Eby, the ALS advocate who chose to ‘get loud’ in inspiring millions, dies at 37

Popular ALS advocate and social media personality Brooke Eby, who vividly documented her life with the disease, has died at 37, the ALS Network announced on October 1. Eby was diagnosed with ALS, short for amyotrophic lateral sclerosis, in 2022 when she was 33 and became popular for sharing candid, humorous, and often personal updates about living with the rare and fatal nerve disease.

Marc Benioff, the co-founder and CEO of Salesforce, confirmed Eby’s death on X, mentioning her as an “amazing warrior” with an extraordinarily positive attitude.

“I am just devastated to hear of the passing of Brooke Eby @limpbroozkit. Brooke was an amazing warrior with an attitude so positive it could melt a glacier. All of my thoughts are with her Ohana at this time. May the One who brings Peace bring Peace to All.”

Brooke Eby’s ALS advocacy

Eby chose to document her experience with ALS, with humor and honesty, to discuss the physical and emotional challenges that came with the disease. The ALS Network in their obituary said her storytelling ‘helped bring ALS to people who previously knew little about the disease.’ Her work also extended to building connections among people living with ALS and their caregivers.

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Eby founded ALStogether, it is an online peer community on Slack where people affected by ALS could connect, exchange information, ask questions, and share their experiences.

In 2026, the ALS Network started integrating ALStogether into the organization to expand its reach and resources, while Eby remained closely involved with the community.

“Brooke changed the way people see ALS, but she also changed the way people living with ALS find and support one another,” said Sheri Strahl, MPH, MBA, president and CEO of the ALS Network.

“She brought humor into incredibly difficult moments, spoke with fearless honesty, and created connection where it was desperately needed. We are 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.”

‘I did choose to get loud’

The ALS Network honored Eby in June 2026 with the Dean and Kathleen Rasmussen Advocate of the Year Award for her advocacy and leadership.

After learning she would receive the award, Eby 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.”

The ALS Network said Eby’s impact extended beyond her large social media following, with her work helping people with ALS and their families find connection and support.

“Brooke leaves behind something that cannot be measured simply in followers, views or membership numbers,” the organization said. “She created connection, she built community, she changed hearts and minds. And she gave people a place to belong.”