An ALS community comes together for support and information
Last updated June 26, 2025, by Mary Chapman
When Brooke Eby was diagnosed with amyotrophic lateral sclerosis (ALS) at age 33 in 2022, she was basically told she had two to five years to live and to get her affairs in order. She was also given a big packet of ALS information and resources.
“So then you go home and your mobility is changing so quickly and you’re stressed, and you have so many questions that the packet doesn’t address,” says Eby, who experienced her first symptom — calf tightness in one leg — when she was 29.
Connecting people through Slack and support
Brooke Eby started ALStogether. (Courtesy of Lisa Helfert Photography)
“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 to be reviewed at any pace you’re comfortable,” she says.
That place is ALStogether, a virtual hub for ALS community support that uses the business messaging app Slack to connect people with ALS to one another as well as to ALS experts, caregivers, and resources such as organizations, clinical trials, equipment, and grants. According to Eby, more than 1,300 people have already joined.
“Fellow people with ALS have the best suggestions, so by putting us all in one place, everyone can get more support and we can learn more about the disease,” says Eby, a Lehigh University business and economics graduate who has worked at Salesforce since 2016.
Speaking up for ALS
After her diagnosis, Eby became an ALS advocate and public speaker. She has a robust social media presence, with nearly 500,000 followers on Instagram and TikTok combined.
Eby uses these platforms to lay bare the realities of her life. She posted daily throughout ALS Awareness Month in May, covering topics such as her “disappearing” appetite, breathing changes, and her need for better core strength. She also answered questions from followers and posted videos showing her disease progression.
In one Instagram post, Eby discusses how she always makes sure she’s as comfortable as possible in bed before going to sleep — including making sure there aren’t any stray hairs on her forehead — since she’s unable to make adjustments later.
She has also opened up about mental challenges. “To not be able to do something today that I could do two weeks ago is beyond comprehension,” she wrote in a May 21 post.
Eby engages her followers with her trademark humor, sharing how she once turned her walker into a limbo pole at a friend’s wedding, for example, and good-naturedly rolling her eyes while recounting unhelpful things well-meaning people say to her.
“Posting every day can be a challenge depending on how tired I am, but it’s worth it for one month,” says Eby, who last year moved in with her parents in Potomac, Maryland.
This May Eby raised $161,000 online for ALS research for Target ALS, exceeding her $150,000 goal. She continues to raise funds through her Team Limp Broozkit campaign, which sells hats, shirts, and other merchandise. Since her diagnosis, Eby says she has raised more than $1 million overall to find ALS treatments.
Building ALS community support
The birth of ALStogether was “very much a team effort” by people affected by ALS, she says. One of those people is Geoff Green, a managing director in mortgage and lending at Salesforce whose father was diagnosed in 2021. To honor him, Green founded ALSforce, an internal group focused on raising ALS awareness, in 2022 — the same year that Eby was diagnosed.
“What became clear was that Brooke should be the person running ALSforce inside Salesforce,” says Green, whose father passed away in 2024. “We all realized that Brooke had a gift.”
ALSforce, which still exists, would become an incubator for ALStogether. To make it reality, Eby put in long hours with Slack CEO Denise Dresser and Salesforce executives.
“Yes, people helped her. But the truth is that Brooke took an idea, shaped it into an executable vision, worked with our technology executives and some of the highest-ranked people in our company, and made it a reality,” Green says. “She did it with laughter, joy, and humility, all amid a personal unfathomable situation. She’s that incredible.”
The centralized hub, which uses Salesforce as a service provider and is sponsored by the nonprofit Social Good Fund, offers dedicated channels for various topics, from genetic variants and veterans to patients under age 40. More will be added based on user suggestions.
“It’s incredible,” Eby says. “I log on every day and just smile seeing people ask questions and support each other. I’m excited to see it grow.”
ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
