Brooke Eby used TikTok and Instagram to document life with ALS, but the project grew beyond personal record-keeping. Her candid videos combined everyday adaptations, humor, public education, fundraising and a peer community through ALStogether. Vogue reported on October 2, 2026, that Eby died the previous day at 37.
What Brooke Eby’s “video diary” showed
Eby described the project to TIME in 2025 as a “video diary.” She filmed changing abilities and ordinary decisions alongside the parts of life that illness can make complicated, including dating, adaptive clothing and tools that helped her function.
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The format gave her a way to explain a difficult diagnosis to many people at once instead of repeating the same conversation individually. The ALS Association reported that she initially wanted that practical relief, then saw an opportunity to make more people care about ALS and support the wider community.
Her diagnosis followed left-foot weakness that she said began about four years earlier. The ALS Association dates the diagnosis to March 2022, when Eby was 33. That timeline describes her experience, not a standard diagnostic course for everyone with ALS.
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Why the account became more than a personal record
| Role | How Eby’s work served it |
|---|---|
| Personal record | She documented daily life, changing abilities, equipment and practical adaptations in real time. |
| Public education | She made questions about ALS easier to ask and showed experiences often absent from conventional illness coverage. |
| Fundraising and advocacy | Her visibility directed attention toward ALS research and organized campaigns. |
| Peer community | ALStogether connected patients, caregivers and others affected by ALS for advice and support. |
That combination explains why describing the account only as a diary misses its public purpose. Eby told TIME that she was sharing her story to help connect people with ALS, not simply to accumulate an audience.
How humor helped people talk about ALS
Eby did not use humor to suggest that ALS was easy. The ALS Association quoted her saying, “But I also think making jokes about it makes people more comfortable asking questions.” In that sense, jokes were an invitation into a difficult conversation: viewers could start with a human, sometimes irreverent moment and then learn about disability, communication and care.
Her approach also challenged a narrow mental picture of ALS. TIME’s profile presented the perspective of a young woman dealing with dating, clothing and ordinary routines, rather than treating the disease as an abstract condition associated only with older men. That visibility mattered without implying that every person with ALS will share her experience or find humor useful.
From followers to organized advocacy
The audience became a route to action. Target ALS reported in July 2025 that Eby had raised more than $1 million for ALS research, and ALS News Today reported the same threshold in April 2026. Those are publisher-dated milestones, not a live total.
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TIME counted more than 400,000 followers across Eby’s social accounts in May 2025. The same profile reported more than 1,200 ALStogether members. By April 2026, ALS News Today reported more than 1,700 members and said ALStogether had become part of the ALS Network. Each figure is a snapshot from the publication date; social follower and membership totals can change.
Eby explained the motivation to Target ALS this way: “I started sharing my story, hoping it would capture attention for the disease.” Her campaigns turned attention into research donations and recurring awareness appeals, including May fundraising efforts reported by Target ALS.
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What is ALStogether?
ALStogether was the community side of Eby’s work. It offered people affected by ALS a place to find one another, exchange practical advice and locate emotional support. Its value was not that it replaced clinicians, caregivers or personal relationships, but that people living with the disease could compare experiences with others who understood the day-to-day realities.
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Outbyte Driver Updater FREEFix the driver behind crashes, sound loss and screen glitchesFind Drivers →Outbyte PC Repair FREERepair Windows errors before they cause bigger problemsFix Now →ALS News Today reported in April 2026 that ALStogether had joined the ALS Network. After Eby’s death, Vogue reported that her family asked readers to consider supporting ALStogether or Team Gleason.
Independent reader supportYour contribution helps us test, update, and keep practical guides available for everyone.Eby’s death and the status of her online legacy
Vogue reported on October 2, 2026, that Eby died on October 1 at age 37. That dated report is the basis for her current status. The ALS Network remembrance linked by Vogue was unavailable when checked, so it should not be treated as an independently inspected source for additional details.
Her videos remain a record of a life with ALS, but their significance is broader: they show how first-person media can educate outsiders, reduce the isolation of diagnosis, raise money and help organize a community. ALS Network president and CEO Sheri Strahl summarized that legacy in ALS News Today: “Brooke embodies what it means to transform personal experience into purpose.”
Adaptive clothing and the Brooke Eby collaboration
Adaptive clothing appeared as a practical subject in Eby’s videos. Vogue reported that she worked with Silverts, whose current Brooke Eby x Silverts page identifies the B.E. Collection. Listed designs include open-back pants, tops, shorts and a dress intended to make dressing easier for people with changing mobility needs.
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1Fix the driver behind crashes, sound loss and screen glitches2Repair Windows errors before they cause bigger problems3Scan for outdated or missing drivers - takes under a minuteSilverts says a portion of each B.E. Collection sale goes to Team Gleason. That statement applies to the B.E. Collection, not automatically to every Silverts product. Availability, sizing and donation terms can change, so readers should confirm current details on the retailer’s own page.
What her method can—and cannot—stand for
- It can show: how a person chooses to explain illness, use humor, share adaptations and invite public engagement.
- It can support: awareness campaigns, research fundraising and peer-to-peer connection.
- It cannot prove: that social media is a treatment, that humor works for every patient or that an online group substitutes for medical care.
- It should not be generalized: Eby’s diagnostic timeline and daily experience were personal, not a template for everyone with ALS.
Why calling it “more than a diary” is accurate
A diary records a life for the person keeping it. Eby’s account did that, but it also addressed an audience and asked that audience to act. Her videos made unfamiliar experiences discussable, her fundraising supported research, and ALStogether gave people affected by ALS a shared place to meet. The personal record was the foundation; advocacy and community-building were what made it consequential.
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