Brooke Eby

Brooke Eby '10: An Advocate in the Fight Against ALS

Eby is driving awareness about the terminal disease and raising hundreds of thousands of dollars for research.

Story by

Mary Ellen Alu

Photography by

Lisa Helfert

Brooke Eby ’10 was rushing to get to a work conference one day in 2018 from her office at Salesforce in New York City. Out of nowhere, it seemed, the then-29-year-old struggled to walk the five blocks and keep up with colleagues.

Problems in her left foot persisted in the weeks that followed, and Eby surmised she had hurt her back or left ankle while exercising. Then other people started noticing the limp.

Eby sought medical attention, but doctors were mystified after running myriad tests. Her limp continued to get worse, no matter how much physical therapy she did.

Not until 2022, after feeling weakness in her right foot too, did she receive an official diagnosis. At age 33, just 12 years after graduating from Lehigh with a degree in business systems information, Eby learned she had ALS—amyotrophic lateral sclerosis, a motor neuron disease commonly known as Lou Gehrig’s disease. There is no cure.

I remember thinking, people are more comfortable if you make them laugh. I think I can make people understand what I'm going through while also still laughing.

Brooke Eby '10

At the time, Eby didn't know much about ALS beyond the Ice Bucket Challenge fundraiser. She didn’t initially know how devastating a diagnosis it was—that ALS progressively degrades nerve cells in the brain and spinal cord, that it eventually robs a person of the ability to stand, walk, talk, eat and breathe. There is no treatment to reverse progression. Most people live for only two to five years after diagnosis, according to the Centers for Disease Control.

“So it's been a learning curve since being diagnosed,” says Eby, who went from cane to walker to wheelchair in under a year.

Eby spent months crying and eating chocolate in despair after her diagnosis. A turning point came at the wedding of close friend Jessica Lubitz ’10, whom she had met on her first day at Lehigh. A bridesmaid, Eby at first felt embarrassed that she needed a walker to get around.

Brooke Eby at Orioles game

“You want people to think you’re doing great,” says Eby, a principal in partnerships at Salesforce. “There was no hiding something was going on with me.”

After an hour or two, though, she was on the dance floor, using the walker as a prop. The bride did the limbo under her walker, and Eby gave other guests walker rides around the dance floor.

“I remember thinking, people are more comfortable if you make them laugh. I think I can make people understand what I'm going through while also still laughing. … I was like, I bet I could scale this and get people talking about ALS without all the fear of saying the wrong thing or all the sadness that usually comes with talking about a terminal diagnosis. I think people don't talk about it because they're scared, and my goal is to make it a lot more approachable.”

Now Eby is at the forefront of the battle against ALS, and she’s using humor to document her experiences. Living in the present, she is driving awareness—the disease can strike at any age—and raising hundreds of thousands of dollars for research through her social media posts and other outreach. She has told her story on NBC’s Today Show, on podcasts including The Toast and other programs, on blogs and in The New Yorker magazine.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

A post shared by TODAY (@todayshow)

On ALS Awareness Night in June 2023, she tossed the ceremonial first pitch at a Baltimore Orioles game.

In a verbal appeal posted on social media, she has advocated for promising drug treatments under review by the Food and Drug Administration.

So far, Eby has raised nearly $1 million for research through her public appeals, including through a unified effort from her colleagues at Salesforce. (She recently addressed 70,000 people at a company kickoff in California.) Her followers on TikTok number more than 100,000, and on Instagram (@LimpBroozkit), more than 85,000.

Eby, whose father Clifford Eby '73 and brother Christopher Eby '05 are also Lehigh alums, says her terminal diagnosis has made her “a lot more open-eyed to joy.” On social media, she answers viewers’ questions to let people know what it’s like to have the disease. “What’s something that a lot of people get wrong about people with ALS?” she’s asked. “How has this changed your outlook on your life?”

“This is the path I’m supposed to be on,” she told one interviewer. “We are all more resilient than we give ourselves credit for.”

Story by

Mary Ellen Alu

Photography by

Lisa Helfert

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