Remembering ALS Advocate Brooke Eby
Brooke Eby, Social Media Creator and Prominent ALS Advocate, Dies at 37
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Key Points
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Eby’s symptoms reportedly began around 2018 with tightness in one foot, and doctors did not identify the cause for years; she received her ALS diagnosis in March 2022 after a four-year search for answers.
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As the disease progressed, Eby reported declining breathing capacity in June 2025, later had a feeding tube placed, and by 2026 was experiencing speech and swallowing problems that made her difficult to understand.
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Before becoming an ALS advocate, Eby graduated from Lehigh University and built a career at Salesforce; reports credit her advocacy with raising more than $1 million for research, and the ALS Network honored her with its Dean and Kathleen Rasmussen Advocate of the Year Award in June 2026.
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Eby emphasized that ALS progression varies sharply from person to person, telling People in 2025 that there was “no guide with ALS” and that people can lose different abilities at very different rates.
Brooke Eby, the TikTok creator known as "LimpBroozkit" who turned her ALS diagnosis into a platform for millions, died at 37 on October 1, ALS Network announced. She was diagnosed with amyotrophic lateral sclerosis in March 2022 at age 33, after a four-year struggle to find answers. Over the next four years, Eby used social media to document her disease with humor and raw honesty, raising over $1 million for research and reshaping how people understood ALS.
Before her diagnosis, Eby graduated from Lehigh University and built a career at Salesforce. She founded ALStogether, a peer-support nonprofit connecting people with ALS and their caregivers to resources and community. CBC noted she used "wit and sincerity" to educate millions. The ALS Network honored her with its Dean and Kathleen Rasmussen Advocate of the Year Award in June 2026, just months before her death.
A Four-Year Search Before Diagnosis
Eby's symptoms began around 2018 with tightness in one foot, but doctors could not identify the cause for years. The silence was frustrating. She sought answers from multiple specialists without getting a clear answer. In March 2022, four years after her first symptom, Eby finally received her ALS diagnosis at age 33. The delay meant she had already lost significant time before knowing what she was fighting.
Sharing Disease Progression Online
Once diagnosed, Eby chose to document her journey on TikTok and Instagram with candor and dark humor. Her posts showed what ALS actually looks like — not a single moment of decline, but a slow erosion of abilities. By June 2025, she reported declining breathing capacity. Later, she had a feeding tube placed. By 2026, speech and swallowing problems made her difficult to understand. People reported her saying there was "no guide with ALS," emphasizing that the disease progresses differently for every person.
Redefining Who Gets ALS
Vogue described how Eby "chronicled her own death online to find a cure." She challenged a widespread myth: that ALS, also called Lou Gehrig's disease, only strikes a specific type of person. Eby was a young woman with a tech career and millions of followers. Her visibility forced a reckoning. ALS organizations say her advocacy strengthened connections among people affected by the disease and educated a generation about a condition many had never heard of before.
A Legacy in Community and Research
Eby's impact extended far beyond TikTok. Perez Hilton noted she "heroically shared" her journey "to help others feel less alone." She fundraised over $1 million for ALS research and built ALStogether to connect patients and caregivers. Her award in June 2026 recognized that work. Now, supporters remember her not as a victim of disease, but as a woman who took control of her narrative and used her platform to build community for others facing the same diagnosis.
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