A Journey from Mysterious Symptoms to Advocacy
In 2018, Brooke Eby noticed something unusual as she hurried through the bustling streets of Manhattan—a slight limp developed in her foot. What she initially thought was a trivial injury turned into a complex medical saga, as the limp persisted and worsened over time. Despite numerous tests, it took four years for physicians to diagnose her with ALS, also known as Lou Gehrig’s disease, at the age of 33.
ALS is characterized by the degeneration of motor neurons in the brain and spinal cord, leading to a gradual loss of voluntary muscle control and eventual paralysis. Upon receiving her diagnosis, Eby turned to social media to spotlight the disease and advocate for enhanced research funding. Her efforts made her one of the most prominent voices for ALS awareness in the United States, using her personal story to educate large audiences, connect affected families, and highlight the pressing need for medical advancements.
Eby shared her journey through videos that candidly depicted life with a terminal illness, attracting a substantial and engaged audience. Her content skillfully blended serious discussions on disease progression with humor and self-deprecating wit. “Levity is my superpower,” Eby remarked during an interview with NBC’s Today show.
Lehigh President Joseph J. Helble ’82 expressed his condolences upon hearing of Eby’s passing, noting, “I was so sorry to learn of Brooke’s passing. I had the privilege of spending some time with her at Lehigh events the past few years. Seeing her talk and laugh with Lehigh friends and with her family, it was so clear how her courage, determination and sense of humor helped her bring together a compassionate and dedicated group of followers and advocates for ALS support, resources, and research. She was such a wonderful and joyful person, and someone making a positive difference in the lives of so many.”
As the keynote speaker at the 2025 Soaring Together Women’s Summit, Eby exemplified the spirit of a Lehigh alum according to Development and Alumni Relations Vice President Carol Packard. “Brooke embodied what it means to be a Lehigh alum. She was bold, quick-witted, resilient, and with infectious humor advocated for herself and others suffering from ALS. It was an honor to know her and we are sorry to have lost her all too soon,” Packard stated.
Reflecting on her impact, Morgan Nelson ’19G, senior director of strategic engagement, added, “Brooke left a permanent mark on every heart in attendance at our Soaring Together Summit. Her words brought us to tears, her sense of humor brought us to laughter, and her immense courage left us all completely inspired.”
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