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Brooke Eby used TikTok and Instagram to document life with ALS, but the project grew beyond personal updates. Her candid videos combined a record of changing abilities with humor, public education, fundraising for research, and a peer community through ALStogether.
Eby died at 37 on October 1, 2026, according to Vogue’s report published October 2, 2026. Her family asked people who wanted to honor her to consider supporting ALStogether or Team Gleason.
What Brooke Eby’s “video diary” showed
Eby described the account to TIME as “a video diary.” Her posts included ordinary and difficult parts of living with ALS: dating, adaptive clothing, changing physical abilities, and tools that helped her function. The format let her explain one diagnosis to many people at once instead of repeating the same painful conversation individually.
The ALS Association’s 2024 profile records that Eby noticed weakness in her left foot about four years before she was diagnosed. The ALS Association dates her diagnosis to March 2022, when she was 33. That timeline belongs to Eby’s experience and should not be treated as a typical diagnostic path for everyone with ALS.
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Her purpose was broader than documenting symptoms. “I’m not doing this for any reason other than to share my story and hope that it gets people connected to ALS,” she told TIME.
How the account became advocacy
Making questions easier to ask
Eby used jokes without pretending that ALS was easy. The ALS Association quoted her saying, “But I also think making jokes about it makes people more comfortable asking questions.” Humor functioned as an invitation into conversation: viewers could engage with an unfamiliar disease without reducing the seriousness of what she was experiencing.
She also described sharing as a responsibility: “I think it’s my responsibility to share my story and hopefully people will start caring more,” she told The ALS Association. Her posts therefore served as public education as well as personal expression.
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Turning attention into research support
Eby connected her visibility to fundraising and research advocacy. Target ALS quoted her saying, “I started sharing my story, hoping it would capture attention for the disease.” Target ALS reported in July 2025 that she had raised more than $1 million for ALS research. ALS News Today reported the same threshold in April 2026. Those are dated reports, not a live total.
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What ALStogether added
Eby’s work also created a place for people affected by ALS to find one another. ALStogether allowed patients, caregivers, and others in the community to connect, exchange practical advice, and offer support. It made the audience an active network rather than a collection of viewers.
TIME reported more than 1,200 ALStogether members in May 2025. ALS News Today reported more than 1,700 members in April 2026 and said the community had become part of the ALS Network. Because membership changes, both numbers should be read with their publication dates.
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The measurable reach of Eby’s work
| Measure | Reported figure | Source and date |
|---|---|---|
| Followers across social accounts | More than 400,000 | TIME, May 8, 2025 |
| ALStogether members | More than 1,200 | TIME, May 8, 2025 |
| Money raised for ALS research | More than $1 million | Target ALS, July 15, 2025 |
| ALStogether members | More than 1,700 | ALS News Today, April 1, 2026 |
| Money raised for ALS research | More than $1 million | ALS News Today, April 1, 2026 |
The figures show growth and reach at specific points in time; they do not establish current follower or membership counts after those reports.
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Coverage in TIME and by The ALS Association presented ALS through a young woman’s daily life, including relationships, clothing, humor, and practical adaptations. That perspective challenged the narrow image many people carry of ALS as a disease seen mainly in older men. Eby kept mundane details in view, which helped outsiders understand that a serious diagnosis still contains ordinary decisions and social life.
Her approach was not a treatment, and an online community cannot replace medical care or personal support. Its value was communicative and connective: it helped people learn, ask questions, donate, and locate others living with similar circumstances.
Independent reader supportYour contribution helps us test, update, and keep practical guides available for everyone.Adaptive clothing and the B.E. Collection
Adaptive clothing was a secondary but visible part of Eby’s content. TIME described her use of adaptive clothing and other tools, and Vogue reported that she worked with Silverts on a clothing line. Silverts’ Brooke Eby x Silverts page identifies the B.E. Collection, including open-back pants, tops, shorts, and a dress. Silverts says a portion of each B.E. Collection sale goes to Team Gleason; that statement applies to the named collection, not automatically to every Silverts product.
Clothing needs vary with mobility, assistance, closures, and personal preference, so the collaboration should be understood as an example of adaptive design rather than a universal solution.
What happened to Brooke Eby
Vogue reported on October 2, 2026, that Eby had died the previous day at age 37. The article also reported her family’s request to support ALStogether or Team Gleason. A remembrance page linked by Vogue was unavailable when checked, so the death date and age here are attributed to Vogue’s direct report.
Eby’s own description remains a useful way to understand the project, but “video diary” understates what it became. Her record of life with ALS also operated as an educational channel, a fundraising platform, and a community infrastructure for people who might otherwise have been trying to navigate the disease alone.
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