{"id":117854,"date":"2026-10-03T22:13:54","date_gmt":"2026-10-04T02:13:54","guid":{"rendered":"https:\/\/bgodinspired.com\/?p=117854"},"modified":"2026-10-03T22:13:54","modified_gmt":"2026-10-04T02:13:54","slug":"brooke-eby-dies-at-37-als","status":"publish","type":"post","link":"https:\/\/bgodinspired.com\/index.php\/bgodinspired-news\/brooke-eby-dies-at-37-als\/","title":{"rendered":"Brooke Eby Dies at 37: The Guide She Wished She&#8217;d Had"},"content":{"rendered":"<div class='booster-block booster-read-block'>\n                <div class=\"twp-read-time\">\n                \t<i class=\"booster-icon twp-clock\"><\/i> <span>Read Time:<\/span>11 Minute, 36 Second                <\/div>\n\n            <\/div><p>Brooke Eby has died. She was 37. The ALS Network, a charity that had honoured her work, announced her death on 1 October 2026 and called her an &#8220;extraordinary advocate, storyteller, community builder and friend.&#8221;<\/p>\n\n<p>Many headlines this week call her a TikTok star. She did not think of herself that way. &#8220;I see it as a video diary,&#8221; she told TIME magazine in 2025.<\/p>\n\n<p>Here is a plainer way to say what she did. Brooke Eby got the worst news of her life. Then she spent the next four and a half years turning it into a guide for whoever got that news next.<\/p>\n\n<h2>Who Was Brooke Eby? A Diagnosis That Took Four Years<\/h2>\n\n<p>Brooke Eby was born in Maryland in the United States. She worked in sales for Salesforce, a large software company. She was about 29 when she noticed her left calf felt tight. Then she began to limp. She could not keep up with friends crossing the street.<\/p>\n\n<p>It took four years and a long list of tests before doctors could tell her why. In March 2022, at 33, she was told she had ALS.<\/p>\n\n<p>ALS stands for amyotrophic lateral sclerosis. In some countries it is called motor neurone disease, or MND. It damages the nerves that tell muscles to move. Over time a person loses the power to walk, to use their hands, to speak, to swallow and to breathe. There is no cure yet. ALS charities say most people live two to five years after it starts, though some live much longer.<\/p>\n\n<p>She did not take the news bravely, and she said so herself. &#8220;I laid in bed for two months eating M&amp;Ms,&#8221; she told the parenting site Scary Mommy in 2025. &#8220;I wasn&#8217;t even in fight or flight \u2014 I was in freeze.&#8221;<\/p>\n\n<p>Then, two months after the diagnosis, she went to a friend&#8217;s wedding. She arrived on a walker, the same kind the bride&#8217;s grandmother was using. &#8220;I wanted to leave immediately,&#8221; she said.<\/p>\n\n<p>Her two best friends promised they would find a way to have fun. A couple of hours later, she said, &#8220;we had the bride limboing under my walker, and I was giving everyone walker rides all over the dance floor.&#8221;<\/p>\n\n<p>That night changed something. &#8220;I could either lean in and have fun,&#8221; she said, &#8220;or spend whatever time I have left being sad.&#8221;<\/p>\n\n<div class=\"convertkit-form wp-block-convertkit-form\" style=\"\"><script async data-uid=\"6491fb8269\" src=\"https:\/\/bgodinspired.kit.com\/6491fb8269\/index.js\" data-jetpack-boost=\"ignore\" data-no-defer=\"1\" data-no-optimize=\"1\" nowprocket><\/script><\/div>\n\n\n<h2>Brooke Eby&#8217;s Videos: &#8220;A Resource I Wish I Had Had&#8221;<\/h2>\n\n<p>In the summer of 2022 she began posting short videos under the name @limpbroozkit. One of the first to spread widely was about telling first dates that she would be using a cane. It was funny. Most of them were. &#8220;Levity is my superpower,&#8221; she said in a 2023 television interview.<\/p>\n\n<p>But the jokes were carrying something useful. She filmed herself trying trial drugs. She tested mobility aids on camera. She explained what it takes to find a good carer. Week by week she showed what the illness really does, and what helps.<\/p>\n\n<p>She was clear about why. &#8220;Part of deciding to share was just making a resource I wish I had had when I was diagnosed.&#8221;<\/p>\n\n<p>That one line explains her whole public life. When she was 33 and frozen in bed, the guide she needed did not exist. So she became it.<\/p>\n\n<p>By May 2025, TIME reported that she had more than 400,000 followers, and it named her on its list of the 100 most influential people in health. Still, she did not see herself as an influencer. She said she was not doing it &#8220;for any reason other than to share my story and hope that it gets people connected to ALS.&#8221;<\/p>\n\n<p>Here is a detail that is easy to skip, because it does not fit neatly into a tribute. She did not pretend to be at peace.<\/p>\n\n<p>In one of her videos, quoted by NBC after her death, she said: &#8220;I&#8217;ve just started feeling like a ticking time bomb.&#8221; And then: &#8220;I thought people said they were at peace in the end, but I feel like I&#8217;m the opposite.&#8221;<\/p>\n\n<p>That honesty is part of the gift. A guide that only showed the brave days would be no use to the next frightened person. She left the scared days in. Someone watching in the first week after a diagnosis could see that both things can be true at once. You can be afraid and still be funny, still be useful, still be yourself.<\/p>\n\n<h2>ALStogether: The Room Brooke Eby Built for the Next Person<\/h2>\n\n<p>Videos go one way. Brooke Eby wanted something that went both ways.<\/p>\n\n<p>When someone is first told they have ALS, the information they need is scattered, and the people who understand best are strangers in other towns. &#8220;I wanted to create a place where people can go and have all of your fellow people with ALS, along with the answers and resources readily available,&#8221; she told ALS News Today.<\/p>\n\n<p>So she used the tool she knew from work. ALStogether runs on Slack, the chat app many offices use. It has separate rooms for different needs: one for veterans, one for people with a genetic form of the disease, one for patients under 40. People with ALS, their carers and experts can all ask and answer.<\/p>\n\n<p>She did not build it alone, and she said so. She called it &#8220;very much a team effort.&#8221; It grew out of a small group inside her company, started in 2022 by a colleague, Geoff Green, after his own father was diagnosed. &#8220;We all realized that Brooke had a gift,&#8221; he said.<\/p>\n\n<p>By May 2025, TIME reported that ALStogether had more than 1,200 members. She described it as &#8220;like a virtual headquarters for the ALS community.&#8221;<\/p>\n\n<p>And she explained why it works in one plain sentence: &#8220;Fellow people with ALS have the best suggestions, so by putting us all in one place, everyone can get more support.&#8221;<\/p>\n\n<p>Carers were welcome too, and that matters. The person doing the lifting, the feeding and the night shifts gets worn down in ways that are easy to miss. If that is you, this free <a href=\"https:\/\/bgodinspired.com\/index.php\/am-i-burned-out-from-caregiving\/\">caregiver burnout check<\/a> takes a few minutes and may help you name how tired you really are.<\/p>\n\n<p>There was more. She said she had raised more than a million US dollars for ALS research. She spoke to the US medicines regulator in support of a new drug. (&#8220;It was denied, though,&#8221; she noted.) In March 2026 the ALS Network named her its Advocate of the Year.<\/p>\n\n<p>When she died, the head of that charity, Sheri Strahl, put it this way: &#8220;Brooke changed the way people see ALS, but she also changed the way people living with ALS find and support one another.&#8221;<\/p>\n\n<h2>What Brooke Eby&#8217;s Life Shows About Hard News<\/h2>\n\n<p>Look at the order things happened in.<\/p>\n\n<p>First, somebody helped her. Two friends at a wedding would not let her go home. They turned a walker into a game. She did not climb out of those two months in bed on her own.<\/p>\n\n<p>Then she turned around and did the same for people she would never meet.<\/p>\n\n<p>And notice where the help came from. Not mainly from experts. It came from people a few steps further down the same road. The person who got the diagnosis last year is the one who knows which questions to ask this year.<\/p>\n\n<p>Many cultures have a way of saying this. In southern Africa the word is <a href=\"https:\/\/bgodinspired.com\/index.php\/personal-growth-and-life-skills\/ubuntu-meaning\/\">ubuntu<\/a>: a person is a person through other people.<\/p>\n\n<p>There is an even older way of putting it. It says comfort was never meant to stop with the person who receives it. In that old picture, God comforts people in their trouble <em>so that<\/em> they can turn and comfort someone else in theirs. Comfort is less like a gift you keep and more like something passed along a line of hands.<\/p>\n\n<p>Brooke Eby never described her work that way, as far as we could find. But it is a fair description of what she did. She was helped, and she passed it on.<\/p>\n\n<p>She was not the only one this week. Esther Rantzen, who died a day earlier at 86, <a href=\"https:\/\/bgodinspired.com\/index.php\/relationships-and-family\/esther-rantzen-dies-childline-50000-calls\/\">started a phone line for lonely older people<\/a> after writing about her own loneliness. Different country, different trouble, same pattern.<\/p>\n\n<p><em>A good place to start:<\/em> <a href=\"https:\/\/bgodinspired.com\/index.php\/free-video-course-feeling-gods-presence\/?utm_source=wordpress&amp;utm_medium=article-inline&amp;utm_content=hero\"><strong>The Beginner&#8217;s Guide to Feeling God&#8217;s Presence Every Day<\/strong><\/a>. A short video and guide for finding something steady on ordinary days, including the hard ones. <a href=\"https:\/\/bgodinspired.com\/index.php\/free-video-course-feeling-gods-presence\/?utm_source=wordpress&amp;utm_medium=article-inline&amp;utm_content=hero\">Get the free guide<\/a>. Free.<\/p>\n\n<h2>What You Can Do With This<\/h2>\n\n<p>None of this costs money.<\/p>\n\n<ul>\n<li><strong>If you have just had hard news,<\/strong> you do not have to be brave yet. Brooke Eby spent two months in bed first. When you can, look for one person who is a few steps ahead of you with the same thing, and ask them the plain questions.<\/li>\n<li><strong>If you have come through something,<\/strong> you are now a few steps ahead of somebody. Think of the one thing you wish you had been told at the start. Tell it to one person who is at the start now.<\/li>\n<li><strong>If someone you love is ill,<\/strong> remember the wedding. Her friends did not fix anything. They stayed, and they found the fun that was still there.<\/li>\n<\/ul>\n\n<h2>The Legacy of Brooke Eby<\/h2>\n\n<p>&#8220;My plan is to post until the end, as long as I&#8217;m capable of it,&#8221; she said in 2025. She kept documenting her life as the illness took more from her.<\/p>\n\n<p>She also wrote this: &#8220;My TikTok presence will live on after I die. I hope it serves as a visual diary for anyone who gets diagnosed and needs a guide.&#8221;<\/p>\n\n<p>She had one more hope, and it has not come true yet. She told an interviewer that in ten years she planned to look at her and say, &#8220;Wow, can you believe ALS wasn&#8217;t curable back then?&#8221;<\/p>\n\n<p>That part is unfinished. The rest is already working.<\/p>\n\n<p>Somewhere this week a person will walk out of a doctor&#8217;s office with three letters they did not have that morning. They will go home and search. And they will find a young woman laughing about her walker, telling the truth about the bad days, and a room full of people saying, &#8220;Here is what helped me.&#8221;<\/p>\n\n<p>She made the thing she wished she had had. Now the next person has it.<\/p>\n\n<p>If you or someone you love is living with ALS or MND, you can find ALStogether by searching for its name online. Most countries also have an ALS or MND association that can point you to people nearby who are a few steps ahead.<\/p>\n\n<p><em>Sources: <a href=\"https:\/\/partners.time.com\/collections\/time100-health-2025\/7279626\/brooke-eby\" target=\"_blank\" rel=\"noopener\">TIME&#8217;s 2025 profile<\/a>; <a href=\"https:\/\/alsnewstoday.com\/alstogether\" target=\"_blank\" rel=\"noopener\">ALS News Today on ALStogether<\/a>; <a href=\"https:\/\/www.scarymommy.com\/lifestyle\/brooke-eby-interview-als-signs-awareness\" target=\"_blank\" rel=\"noopener\">her 2025 interview with Scary Mommy<\/a>; a <a href=\"https:\/\/www.neuromuscularfoundation.org\/home\/2023\/07\/13\/finding-hope-and-laughter-in-the-face-of-als-brooke-eby-s-journey\" target=\"_blank\" rel=\"noopener\">2023 profile by a neuromuscular research foundation<\/a>; and reports of her death from <a href=\"https:\/\/www.nbcchicago.com\/news\/local\/social-media-influencer-brooke-eby-dies-at-37-after-battle-with-als\/3997056\/\" target=\"_blank\" rel=\"noopener\">NBC Chicago<\/a> and <a href=\"https:\/\/www.dexerto.com\/tiktok\/tiktoker-brooke-eby-dead-at-37-from-als-3415001\/\" target=\"_blank\" rel=\"noopener\">Dexerto<\/a>.<\/em><\/p>\n\n<h2>Discussion Question<\/h2>\n\n<p>Brooke Eby said the best suggestions came from &#8220;fellow people with ALS,&#8221; not only from experts. When you are facing something hard, whose advice do you trust more: an expert, or someone who has already been through it? Tell us why in the comments below.<\/p>\n\n<div class=\"convertkit-form wp-block-convertkit-form\" style=\"\"><script async data-uid=\"6491fb8269\" src=\"https:\/\/bgodinspired.kit.com\/6491fb8269\/index.js\" data-jetpack-boost=\"ignore\" data-no-defer=\"1\" data-no-optimize=\"1\" nowprocket><\/script><\/div>\n\n\n<h2>Share This<\/h2>\n\n<p><strong>Post 1:<\/strong> Brooke Eby spent two months in bed after her ALS diagnosis. Then she made &#8220;a resource I wish I had had&#8221; for the next person. She died this week at 37. Worth reading. https:\/\/bgodinspired.com\/?p=117854<\/p>\n\n<p><strong>Post 2:<\/strong> The detail I can&#8217;t stop thinking about: two months after being told she had ALS, Brooke Eby had a bride limboing under her walker at a wedding. Her friends didn&#8217;t fix anything. They stayed. https:\/\/bgodinspired.com\/?p=117854<\/p>\n\n<p><strong>Post 3:<\/strong> &#8220;Fellow people with ALS have the best suggestions.&#8221; Brooke Eby built a room where newly diagnosed people could find someone a few steps ahead. The best help often comes from someone on the same road. https:\/\/bgodinspired.com\/?p=117854<\/p>\n\n<h2>Q&amp;A: Brooke Eby, ALS and ALStogether<\/h2>\n\n<h3>When did Brooke Eby die and how old was she?<\/h3>\n<p>Brooke Eby, the American ALS advocate known online as @limpbroozkit, died on 1 October 2026 at the age of 37 from complications of ALS. Her death was announced the same day by the ALS Network, which had named her its Advocate of the Year in March 2026.<\/p>\n\n<h3>What was Brooke Eby known for?<\/h3>\n<p>Brooke Eby was known for honest, often funny videos about living with ALS, which she began posting in the summer of 2022 after being diagnosed at 33. She said part of her reason was &#8220;making a resource I wish I had had when I was diagnosed.&#8221; She also started ALStogether, an online community for people with ALS and their carers, and was named on the TIME100 Health list in 2025.<\/p>\n\n<h3>What is ALStogether?<\/h3>\n<p>ALStogether is an online community for people with ALS and their carers, started by Brooke Eby with help from colleagues at Salesforce. It runs on the chat app Slack and has separate channels for different needs, such as veterans, people with genetic forms of ALS and patients under 40. TIME reported in May 2025 that it had more than 1,200 members.<\/p>\n\n<h3>What is ALS?<\/h3>\n<p>ALS, or amyotrophic lateral sclerosis, is a disease that damages the nerves that control muscles. It is also called motor neurone disease (MND) in some countries. Over time it takes away the ability to walk, use the hands, speak, swallow and breathe. There is currently no cure. ALS charities say most people live two to five years after symptoms begin, though some live much longer.<\/p>\n\n<h3>How long did it take for Brooke Eby to be diagnosed with ALS?<\/h3>\n<p>It took about four years. Brooke Eby first noticed tightness in her left calf and a limp when she was about 29. After years of tests, she was diagnosed with ALS in March 2022 at the age of 33. She lived for four and a half years after her diagnosis.<\/p>        <div class=\"booster-block booster-reactions-block\">\n            <div class=\"twp-reactions-icons\">\n                \n                <div class=\"twp-reacts-wrap\">\n                    <a react-data=\"be-react-1\" post-id=\"117854\" class=\"be-face-icons un-reacted\" href=\"javascript:void(0)\">\n                        <img decoding=\"async\" src=\"https:\/\/bgodinspired.com\/wp-content\/plugins\/booster-extension\/\/assets\/icon\/happy.svg\" alt=\"Happy\" title=\"\">\n                    <\/a>\n                    <div class=\"twp-reaction-title\">\n                        Happy                    <\/div>\n                    <div class=\"twp-count-percent\">\n                                                    <span style=\"display: none;\" class=\"twp-react-count\">0<\/span>\n                        \n                                                <span class=\"twp-react-percent\"><span>0<\/span> %<\/span>\n                                            <\/div>\n                <\/div>\n\n                <div class=\"twp-reacts-wrap\">\n                    <a react-data=\"be-react-2\" post-id=\"117854\" class=\"be-face-icons un-reacted\" href=\"javascript:void(0)\">\n                        <img decoding=\"async\" src=\"https:\/\/bgodinspired.com\/wp-content\/plugins\/booster-extension\/\/assets\/icon\/sad.svg\" alt=\"Sad\" title=\"\">\n                    <\/a>\n                    <div class=\"twp-reaction-title\">\n                        Sad                    <\/div>\n                    <div class=\"twp-count-percent\">\n                                                    <span style=\"display: none;\" class=\"twp-react-count\">0<\/span>\n                                                                        <span class=\"twp-react-percent\"><span>0<\/span> %<\/span>\n                                            <\/div>\n                <\/div>\n\n                <div class=\"twp-reacts-wrap\">\n                    <a react-data=\"be-react-3\" post-id=\"117854\" class=\"be-face-icons un-reacted\" href=\"javascript:void(0)\">\n                        <img decoding=\"async\" src=\"https:\/\/bgodinspired.com\/wp-content\/plugins\/booster-extension\/\/assets\/icon\/excited.svg\" alt=\"Excited\" title=\"\">\n                    <\/a>\n                    <div class=\"twp-reaction-title\">\n                        Excited                    <\/div>\n                    <div class=\"twp-count-percent\">\n                                                    <span style=\"display: none;\" class=\"twp-react-count\">0<\/span>\n                                                                        <span class=\"twp-react-percent\"><span>0<\/span> %<\/span>\n                                            <\/div>\n                <\/div>\n\n                <div class=\"twp-reacts-wrap\">\n                    <a react-data=\"be-react-6\" post-id=\"117854\" class=\"be-face-icons un-reacted\" href=\"javascript:void(0)\">\n                        <img decoding=\"async\" src=\"https:\/\/bgodinspired.com\/wp-content\/plugins\/booster-extension\/\/assets\/icon\/sleepy.svg\" alt=\"Sleepy\" title=\"\">\n                    <\/a>\n                    <div class=\"twp-reaction-title\">\n                        Sleepy                    <\/div>\n                    <div class=\"twp-count-percent\">\n                                                    <span style=\"display: none;\" class=\"twp-react-count\">0<\/span>\n                        \n                                                <span class=\"twp-react-percent\"><span>0<\/span> %<\/span>\n                                            <\/div>\n                <\/div>\n\n                <div class=\"twp-reacts-wrap\">\n                    <a react-data=\"be-react-4\" post-id=\"117854\" class=\"be-face-icons un-reacted\" href=\"javascript:void(0)\">\n                        <img decoding=\"async\" src=\"https:\/\/bgodinspired.com\/wp-content\/plugins\/booster-extension\/\/assets\/icon\/angry.svg\" alt=\"Angry\" title=\"\">\n                    <\/a>\n                    <div class=\"twp-reaction-title\">Angry<\/div>\n                    <div class=\"twp-count-percent\">\n                                                    <span style=\"display: none;\" class=\"twp-react-count\">0<\/span>\n                                                                        <span class=\"twp-react-percent\"><span>0<\/span> %<\/span>\n                        \n                    <\/div>\n                <\/div>\n\n                <div class=\"twp-reacts-wrap\">\n                    <a react-data=\"be-react-5\" post-id=\"117854\" class=\"be-face-icons un-reacted\" href=\"javascript:void(0)\">\n                        <img decoding=\"async\" src=\"https:\/\/bgodinspired.com\/wp-content\/plugins\/booster-extension\/\/assets\/icon\/surprise.svg\" alt=\"Surprise\" title=\"\">\n                    <\/a>\n                    <div class=\"twp-reaction-title\">Surprise<\/div>\n                    <div class=\"twp-count-percent\">\n                                                    <span style=\"display: none;\" class=\"twp-react-count\">0<\/span>\n                                                                        <span class=\"twp-react-percent\"><span>0<\/span> %<\/span>\n                                            <\/div>\n                <\/div>\n\n            <\/div>\n        <\/div>\n\n    ","protected":false},"excerpt":{"rendered":"<p>Brooke Eby has died at 37, four years after an ALS diagnosis. She set out to make the resource she wished she&#8217;d had, then built a room so no one faced it alone.<\/p>\n","protected":false},"author":1,"featured_media":117853,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_wp_convertkit_post_meta":{"form":"-1","landing_page":"0","tag":"0","restrict_content":"0"},"footnotes":""},"categories":[3589],"tags":[],"class_list":["post-117854","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-bgodinspired-news"],"_links":{"self":[{"href":"https:\/\/bgodinspired.com\/index.php\/wp-json\/wp\/v2\/posts\/117854","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/bgodinspired.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/bgodinspired.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/bgodinspired.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/bgodinspired.com\/index.php\/wp-json\/wp\/v2\/comments?post=117854"}],"version-history":[{"count":1,"href":"https:\/\/bgodinspired.com\/index.php\/wp-json\/wp\/v2\/posts\/117854\/revisions"}],"predecessor-version":[{"id":117855,"href":"https:\/\/bgodinspired.com\/index.php\/wp-json\/wp\/v2\/posts\/117854\/revisions\/117855"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/bgodinspired.com\/index.php\/wp-json\/wp\/v2\/media\/117853"}],"wp:attachment":[{"href":"https:\/\/bgodinspired.com\/index.php\/wp-json\/wp\/v2\/media?parent=117854"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/bgodinspired.com\/index.php\/wp-json\/wp\/v2\/categories?post=117854"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/bgodinspired.com\/index.php\/wp-json\/wp\/v2\/tags?post=117854"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}