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    Brooke Eby

    Also known as Brooke Elizabeth Eby

    Brooke Eby was an American patient-advocate who was diagnosed with ALS at 33 and shared her experience of the disease on social media with candour and humour, reaching millions of people.[1][2] She founded the ALStogether peer community and was the ALS Network's 2026 Advocate of the Year. The ALS Network announced her death, aged 37, on 1 October 2026.[3][4][5]

    Editor reviewedStrict sourcingUpdated WikiHealth and medicine
    Key facts

    Brooke Eby was a patient-advocate who made life with amyotrophic lateral sclerosis visible to a large online audience.[2] The ALS Network, which worked with her, announced her death on 1 October 2026. She was 37.[5] This page covers only her public advocacy as reported by the ALS Network and news outlets. For the disease itself, see ALS or the introduction ALS explained.

    Diagnosis and public storytelling

    Eby was diagnosed with ALS in 2022, at age 33.[1] That is young for the disease: symptoms most commonly begin between 55 and 75.[6] She chose to share her experience publicly. According to the ALS Network, millions came to know her through social media, where she gave an unfiltered view of living with ALS.[1][2] Rolling Stone reported that she had more than 300,000 followers on TikTok.[2]

    She described her aim as giving ALS a face. She said she wanted people who hear the word ALS to picture a real person, and to be angered by the lack of clinical progress.[7]

    ALStogether

    Eby founded ALStogether, an online Slack community where people with ALS and their caregivers could find each other and share information.[3] In 2026 the community joined the ALS Network to expand its reach. It had more than 1,700 members as of March 2026.[3]

    Recognition

    In March 2026 the ALS Network named her its 2026 Dean and Kathleen Rasmussen Advocate of the Year, calling her one of the most visible ALS advocates, and honoured her in June.[4] Responding to the award, she said: “I didn’t choose ALS, but I did choose to get loud, and be irreverent about it.”[8]

    Context

    ALS damages the motor neurons that control movement and breathing. Most people die within three to five years of their first symptoms, and no treatment stops or reverses the disease.[9][10][11] People with ALS usually stay fully aware as their function declines, which can cause anxiety and depression for them and their families.[12] Current research, including the September 2026 phase 3 results for a gene-targeted drug, is tracked in the ALS research tracker.[13] If you or someone close to you is affected by ALS, a neurologist or ALS care team is the right place to start.[14]

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    Questions readers ask

    Who was Brooke Eby?

    An ALS patient-advocate, diagnosed at 33, who documented her life with the disease on social media with candour and humour and reached millions of people.[1][2]

    When did Brooke Eby die?

    The ALS Network announced her death on 1 October 2026. She was 37.[5]

    What is ALStogether?

    An online Slack peer community for people with ALS and caregivers, which Eby founded. It joined the ALS Network in 2026 and had more than 1,700 members as of March 2026.[3]

    What award did Brooke Eby receive?

    The ALS Network named her its 2026 Dean and Kathleen Rasmussen Advocate of the Year and honoured her in June 2026.[4]

    Sources

    · 14 claims from 8 publishers

    Each numbered claim is a statement we checked against the sources listed with it. Tap a number in the text to see its sources in place.

    1. [1]

      Brooke Eby was diagnosed with ALS in 2022, at age 33. confirmedas of 2026-10-02

    2. [2]

      Eby documented life with ALS on social media with candour and humour, reaching millions of people; Rolling Stone reported she had over 300,000 followers on TikTok. confirmedas of 2026-10-02

    3. [3]

      Eby founded ALStogether, an online Slack peer community for people with ALS and caregivers, which joined the ALS Network in 2026 and had more than 1,700 members as of March 2026. confirmedas of 2026-10-01

    4. [4]

      The ALS Network named Eby, whom it called one of the most visible ALS advocates, its 2026 Dean and Kathleen Rasmussen Advocate of the Year in March 2026 and honoured her in June 2026. confirmedas of 2026-10-01

    5. [5]

      ALS patient-advocate Brooke Eby died aged 37; the ALS Network announced her death on 1 October 2026. confirmedas of 2026-10-02

    6. [6]

      ALS can occur at any age but symptoms most commonly develop between 55 and 75; men are slightly more likely than women to develop it. confirmedas of 2026-10-11

    7. [7]

      Eby said she wanted people who hear the word ALS to picture a real person's face, and to be angered by the lack of clinical progress as they followed her progression. confirmedas of 2026-10-02

    8. [8]

      Responding to the award, Eby said, "I didn't choose ALS, but I did choose to get loud, and be irreverent about it." confirmedas of 2026-03-26

    9. [9]

      Amyotrophic lateral sclerosis (ALS), formerly known as Lou Gehrig's disease, is a progressive neurological disorder affecting motor neurons, the nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing. confirmedas of 2026-10-11

    10. [10]

      Most people with ALS die of respiratory failure, usually within three to five years of symptoms first appearing, but about 1 in 10 survive 10 years or more. confirmedas of 2026-10-11

    11. [11]

      There is no treatment that stops or reverses ALS; approved drugs may prolong survival, slow decline or manage symptoms. confirmedas of 2026-10-11

    12. [12]

      People with ALS usually remain able to reason, remember and understand, so they are aware of their loss of function, which can cause anxiety and depression for them and their families. confirmedas of 2026-10-11

    13. [13]

      On 22 September 2026 Otsuka and Ionis announced that the phase 3 FUSION trial of ulefnersen in FUS-ALS met its primary endpoint, a joint-rank measure of function and survival through day 505 (p=0.0005 versus placebo). confirmedas of 2026-09-22

    14. [14]

      Care for ALS is best provided by multidisciplinary teams, including physical, occupational and speech therapy; the NHS says people with MND should see their care team every 2 or 3 months. confirmedas of 2026-10-11

    Revision history (1)
    1. Page created.

    Created Oct 11, 2026. Last reviewed by an editor on Oct 11, 2026. Next scheduled review: Jan 11, 2027.

    Cite this page

    "Brooke Eby." ContentLora, updated Oct 11, 2026. https://contentlora.com/wiki/brooke-eby

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