Brooke Eby, ALS Advocate Who Humanized Terminal Diagnosis With Humor, Dies at 37

Key points

• Brooke Eby died at 37 from complications of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, according to the ALS Network.
• Diagnosed in 2022 at age 33, Eby began documenting her experience on social media two months later, using wit and candor to explain the realities of the disease.
• She founded ALStogether, an online peer support community for people living with ALS and their caregivers, which was integrated into the ALS Network in 2026.
• Eby collaborated with adaptive clothing company Silverts to create the B.E. Collection, designed for younger people with disabilities, with proceeds benefiting Team Gleason.
• In June 2026, the ALS Network honored her with the Dean and Kathleen Rasmussen Advocate of the Year Award.

Background

Eby’s advocacy emerged during a period of increased public attention on ALS, following the 2023 death of actor Bryan Randall, Sandra Bullock’s partner, and the 2026 death of former NFL player O.J. Brigance. Additionally, in September 2026, a Phase 3 trial for the ALS drug ulefnersen met its primary endpoint, highlighting ongoing scientific efforts to treat the disease.

How outlets are covering it

While TODAY.com emphasizes Eby’s role in changing public perception through humor and her 2023 appearance on the show, the ALS Network highlights her structural impact, specifically the creation of the ALStogether community and her advocacy for faster research. The Baltimore Sun focuses on her local roots in Potomac, Maryland, and her fundraising success, noting she raised more than $1 million for research. USA Today provides personal context from a 2024 interview, detailing her family’s initial denial of the diagnosis and her pragmatic approach to experimental treatments.

Why it matters

Eby’s death underscores the urgent need for ALS research and the power of digital advocacy in shifting public understanding of neurodegenerative diseases. Her work demonstrated that humor could be a tool for education, helping to destigmatize the condition and connect isolated patients through digital communities.

What to watch

The ALS Network has stated it will steward the ALStogether community forward, protecting its unique culture while expanding its resources. Eby’s legacy will continue through the B.E. Collection and the ongoing efforts to fund ALS research, which she argued must move at the 'speed of ALS.'