Editor’s Note: Brooke Eby, a Montgomery County resident who documented her life with amyotrophic lateral sclerosis on social media, died Thursday at age 37, according to the national nonprofit ALS. In his memory, Bethesda Magazine and Bethesda Today are republishing two stories written about him.
Bethesda Magazine’s Women Who Inspire 2023
“Hello. My name is Brooke and I have been diagnosed with terminal ALS.”
This is how Brooke Eby, 34, of North Bethesda, begins most of her Instagram and TikTok stories. But words struggle to reconcile with the vibrant young woman on screen.
Since being diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, in March 2022, Eby has become one of the most optimistic faces to portray a progressive neuromuscular disease with few treatments, no cure and certain death. And she’s used her positive attitude, charisma and social media savvy to raise hundreds of thousands of dollars — and counting — for ALS research.
“Other diseases have survivors who can rally the troops. (…) With ALS, there are no survivors,” she says.
During the first months after her diagnosis, Eby, head of partnerships at Salesforce, a California-based software company, admits that she spent the time “crying and shoving M&Ms in my face.”
But then she started typing a list of ideas on her phone to educate younger generations about the disease. She shared the list with her mother, her sister and one of her friends. They were all supportive, she says, “so I just started making videos.”
Eby, a graduate of Winston Churchill High School in Potomac and Lehigh University in Pennsylvania, has since published articles on everything from the dangers of dating while disabled to videos of herself grimacing as she swallows Relyvrio, her bitter ALS medication. The drug, approved by the U.S. Food and Drug Administration last year, is one of the few ALS medications available on the market.
Eby posted videos from her apartment every evening in May, during ALS Awareness Month. In many clips, she leans in close and answers her followers’ questions, which range from silly to deeply personal.
“She had pre-populated the donation field on Instagram with five dollars,” recalls Carol Hamilton, vice president of development for the ALS Therapy Development Institute, the world’s largest nonprofit focused on ALS research. “In a few days, it exceeded $50,000 (in donations),” Hamilton said.
The same month, Eby appeared on NBC’s Today to show. An anonymous couple saw the interview and messaged him on Instagram offering him $100,000. In about six weeks, Eby managed to raise more than $225,000 for research into a cure for ALS.
In June, the Baltimore Orioles approached Eby and asked if she would throw out the ceremonial first pitch before a game against the Toronto Blue Jays. “If I can’t launch it very well, then I hope it does so badly that it goes viral,” she said. Bethesda Review the day before the match.
Afterward, she posted a video of herself — dressed in a Lou Gehrig jersey — heading to the pitcher’s mound in her motorized wheelchair and smiling as she threw a very impressive pitch right into the catcher’s glove.
“Brooke (is) able to reach outside of the ALS community by using her humor and social platform to introduce ALS to a whole new group of people in a non-intimidating way,” says Hamilton, who realized how special Eby is after her own 25-year-old daughter, Jae, saw Eby interviewed on Toasta podcast popular with 20-30 year olds, and which was overwhelmed with emotion.
For Hamilton, it was impactful because “it wasn’t me talking to my daughter about an incredible young woman with ALS. It was my daughter…who was touched and inspired by (Eby) alone.”
Today, Eby has over 86,000 followers on TikTok and over 73,000 followers on Instagram, and these numbers are constantly increasing.
On a sunny June afternoon, sitting in her wheelchair outside a coffee shop at North Bethesda’s Pike & Rose, Eby continues to brainstorm ideas to raise awareness and funds for research. Although the disease has left his legs paralyzed, his upper body and voice are still strong.
As she sips her tea, she says maybe she could conduct interviews in a man-on-the-street style, like YouTube’s Billy Eichner.
“I would ask a bunch of different people, ‘Who do you imagine when you imagine ALS?’ and I guarantee 75% of them will say, “What is ALS?” she said as she sat back in her chair to think about how she would bring the video to life.
“I support anyone raising money for ALS,” she says, whether they’re looking to cover the exorbitant cost of their own and their caregivers’ equipment, or being able to raise money for research.
“I’m still working, I’m financially comfortable, so I feel like I’ve kind of checked out that basket of care for myself and I want to focus…(on) research,” she says. “Ultimately, my goal is to heal.”
This story appeared in the September/October 2023 issue of Bethesda Magazine.
Potomac woman launches adaptive clothing line
Since being diagnosed in 2022 with Lou Gehrig’s disease (also called amyotrophic lateral sclerosis or ALS), Potomac’s Brooke Eby has chronicled her experience on social media and advocated for funding for ALS research.
Today, the 36-year-old is launching a new line of adaptive clothing. Eby spent a year working with Silverts, an Ontario-based clothing company, to design items incorporating Silverts’ adaptive functionality but aimed at a younger customer base.
“I went from using a cane to a walker to a wheelchair very quickly and I didn’t have any clothes that made my life easier,” says Eby, who was featured in Bethesda Magazine Women who inspire in 2023.
After discovering Silverts pants, she says she couldn’t wait to have more options, and her BE collection includes stylish basics that can be dressed up or down.
“There are so many young people with disabilities who want to look cute while having clothes that are easy to put on. » A portion of proceeds from sales will be donated to Team Gleason, which focuses on patient care and resources for people with ALS.
This story appeared in the November/December 2025 issue of Bethesda Magazine.
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