The ALS Network joins the ALS community in mourning the passing of Brooke Eby, an extraordinary advocate, storyteller, community builder, and friend whose honesty, humor and determination changed how countless people understood ALS.
Diagnosed with ALS at just 33 years old, Brooke made the deeply personal decision to share her experience publicly. She did so in a way that was unmistakably her own – candid, vulnerable, funny, irreverent, and remarkably human.
Millions came to know Brooke through her social media presence, where she offered an unfiltered window into living with ALS. She could explain a devastating reality, challenge a misconception, and make people laugh, sometimes all in the same post.
Through that storytelling, Brooke helped bring ALS to people who previously knew little about the disease. She turned awareness into understanding and understanding into action. Yet some of Brooke’s most enduring impact happened in the community she created for others living with ALS.
Brooke founded ALStogether, an online peer Slack community built around a simple but powerful idea: people navigating ALS should have a place to find others who understand what they are experiencing.
ALStogether grew into a vibrant community where people living with ALS and caregivers could connect in real time, exchange information, ask questions, share frustrations and victories, and simply be themselves.
In 2026, Brooke and the ALS Network began a new chapter for ALStogether, integrating the community into the organization to expand its reach, resources, and long-term impact. Brooke remained deeply connected to the community and to the vision behind it.
“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.”
In June 2026, the ALS Network honored Brooke with the Dean and Kathleen Rasmussen Advocate of the Year Award, recognizing her extraordinary leadership and impact.
When she learned she would receive the award, Brooke responded exactly as those who knew her might expect: “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.”
She was helping in ways both enormous and deeply personal. Brooke helped people understand ALS. She helped people living with ALS find each other. She helped families feel seen. She challenged assumptions, inspired action, and reminded a vast audience that a person living with ALS is always far more than a diagnosis. And she made people laugh.
Brooke leaves behind something that cannot be measured simply in followers, views or membership numbers. She created connection, she built community, she changed hearts and minds. And she gave people a place to belong.
The ALS Network extends its deepest condolences to Brooke’s family, friends, and loved ones, and to the entire ALStogether community grieving this tremendous loss.
We are profoundly grateful for the trust Brooke placed in the ALS Network to help steward ALStogether into the future. We will honor that trust by protecting what made this community so special while continuing to build upon the vision she began.
Brooke once promised she wasn’t getting quiet. She hasn’t. Her voice lives on in the people she inspired, the community she created, and the movement she helped shape.
We will miss her deeply. And we will carry her legacy forward.