Brooke Eby, a social media influencer and prominent ALS advocate from Potomac, has died from complications of the disease.

The 37-year-old was diagnosed with amyotrophic lateral sclerosis in March 2022 and shared her experience on TikTok through posts that the nonprofit ALS Network described as “candid, vulnerable, funny, irreverent, and remarkably human.”

ALS, also known as Lou Gehrig’s disease, is a neurodegenerative disease that affects nerve cells in the spinal cord and the brain. The progressive condition eventually leads to death.

The ALS Network, which provides care services, raises awareness and researches the disease, announced Eby’s death on Thursday. The organization described Eby as an “extraordinary advocate” who changed how people understood ALS “in a way that was unmistakably her own.”

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“She could explain a devastating reality, challenge a misconception, and make people laugh, sometimes all in the same post,” the organization said in a news release.

Eby founded ALStogether, an online Slack community where people navigating ALS can connect with each other. The hub became part of the ALS Network in 2026.

“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, president and CEO of the ALS Network, in a news release. “She brought humor into incredibly difficult moments, spoke with fearless honesty, and created connection where it was desperately needed.”

In June, the ALS Network recognized Eby with the Dean and Kathleen Rasmussen Advocate of the Year Award for her “extraordinary leadership and impact.” Eby said she was grateful for the award and for knowing she was helping in her “own weird way.”

“I didn’t choose ALS, but I did choose to get loud, and be irreverent about it,” she said.