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

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.

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.

“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.