It was a conversation with Target ALS on January 23, 2025, that would reveal the powerful, unyielding spirit of Diane Pascot—a woman whose life has taken a turn over the last few years that she never could have anticipated. As Diane spoke, her words echoed with resilience, hope, and a fierce determination to advocate for herself, her family, and the greater ALS community.
Diane, 55, lives in the Detroit area with her husband, Steve. They have two grown children; a son graduating from Michigan Tech, and a daughter in graduate school.
When she first spoke about her 25 years of work in healthcare software, she laughed and shared, “I still don’t know what I want to be when I grow up. In fact, someone just asked me, how did you get into this line of work? And I said, I played softball with somebody who was in it.”
An Unlikely Path to ALS Diagnosis
Her story would shift profoundly in 2019, when Diane began experiencing unusual arm and wrist spasms. “It started with these bizarre and intense arm and wrist spasms out of nowhere,” she recalled. She sought medical help, but like so many, found little clarity at first. As the pandemic hit and the world shut down, the symptoms began to evolve. By the time she sought more answers post-lockdown, weakness and stiffness had set in.
In September 2021, Diane received the diagnosis that no one expects to hear: ALS. With little knowledge of the disease and no family history, the phone call was overwhelming. “The doctor called me at… six o’clock, the Friday of Labor Day weekend, and the first thing she said was, ‘I’m sorry, but you have ALS.’” Diane recalled the shocking moment that she was told that her life expectancy was two to five years. “It was utterly overwhelming, and of course, here it is, a holiday weekend with nowhere to go but the internet.”
ALS, often known as Lou Gehrig’s disease, is an unpredictable illness that slowly robs people of their ability to move, speak, and breathe. Diane learned that it is a disease marked by its relentless progression, yet uniquely experienced by each person it touches. “It’s a snowflake disease,” she explained, “everyone’s case is different.”
Diane’s story over the last three years is one of unwavering commitment to not only her own journey, but to the entire ALS community. After her diagnosis, Diane pursued participation in clinical trials, understanding that research is the key to finding effective treatments. “I’m passionate about being part of the solution here,” she said. “Hopefully for myself, I’m knocking on wood, I’ve been a slow progressor… but no one ever knows. And if not for me, for others who will face this diagnosis.”
Diane’s focus on what is in her control remains constant, despite the challenges. “Research is our only hope, at this point. Wherever we can, wherever we’re able to be part of this fight, I want to partner with the brains in the room, with the clinicians, with each other.” Diane expressed excitement about the future of ALS research, particularly the collaborative efforts she has witnessed, from data sharing to idea exchange. “I think that’s the only thing that’s going to get us there,” she noted.
Throughout her journey, Diane has found solace in the support of her family. Her husband, medically retired after battling cancer, has been her rock. He too believes in the value of science and is considering participating in ALS research as a healthy control. Her children, though facing their own paths in life, offer love and encouragement. Diane’s daughter, studying autism therapy, and her son, with dreams of pursuing a career in music, have witnessed their mother’s strength as she navigates life with ALS. Diane’s message to her son was clear: “Do it now while you’re young and have no responsibilities.”
A Journey of Resilience and Commitment to ALS Research
For Diane, though ALS has altered the course of her life, it has not defined her. The disease may have slowed her down, but it has not stopped her from pursuing a life filled with purpose. “We’ve been very lucky,” Diane said, reflecting on the slow progression of her illness, “and we know it’s coming. But we’re going to try to make decisions early… not just in time, but a little earlier than just in time.”
Though the future is uncertain, Diane’s commitment to ALS research and her belief in its power to change the lives of those affected by the disease is unshakeable, and one of the things that keeps her moving forward.
Diane Pascot’s journey is a testament to the importance of participation in research, the hope that fuels it, and the compassion that must surround every diagnosis. It is a story of resilience, of turning fear into action, and of a relentless belief that, with time and collaboration, there is hope on the horizon for those living with ALS.
Would you like to participate in research? Visit TargetALS.org.
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