Brooke Eby, the ALS advocate who built a global community, dies at 37

Key points

• The ALS Network announced Eby's death on October 1, 2026, citing complications from amyotrophic lateral sclerosis.
• Eby was diagnosed at age 33 in 2022 and began sharing her journey on social media two months later.
• She founded ALStogether, a peer support community that grew to 1,700 members and was integrated into the ALS Network in 2026.
• In June 2026, Eby received the Dean and Kathleen Rasmussen Advocate of the Year Award from the ALS Network.
• She collaborated with adaptive clothing company Silverts to create the B.E. Collection, with proceeds benefiting Team Gleason.

Background

Eby's death follows other high-profile ALS cases, including the recent passing of former NFL player O.J. Brigance. Her advocacy coincided with recent scientific developments, such as the Phase 3 success of ulefnersen for a rare form of ALS, highlighting the ongoing urgency for research funding and awareness that Eby championed.

How outlets are covering it

While all outlets confirm her passing, they emphasize different aspects of her legacy. USA TODAY focuses on her personal coping mechanisms, noting her use of humor to manage the 'denial' within her family and her willingness to participate in NIH research studies despite skepticism. The ALS Network highlights her structural impact, specifically the creation of ALStogether and her 2026 award, framing her as a community builder who changed how patients support one another. TODAY.com and the Baltimore Sun emphasize her public advocacy, noting she raised over $1 million for research and challenged the scientific community to 'operate at the speed of ALS.' TODAY.com also details her work in adaptive fashion, a detail omitted by the other sources.

Why it matters

Eby's death underscores the lack of effective treatments for ALS, a disease with no cure. Her ability to raise over $1 million and build a large community demonstrates the power of digital advocacy in driving research funding and changing public perception of neurodegenerative diseases.

What to watch

The ALS Network has stated it will steward the ALStogether community forward, honoring Eby's vision to expand its reach and resources. The organization will continue to advocate for the urgency of ALS research, a cause Eby championed until her final days.