Bill Corrigan first noticed the signs that he was getting weaker while training for the Berlin Marathon. The avid runner, who was working towards the goal of completing the world’s six major marathons, knew something must be wrong after he finished the race in six hours – two hours more than he had expected. Soon he was only able to run for five or ten minutes. Finally, on Groundhogs’ Day 2022, he received his official diagnosis of ALS.
“After about a month or so of being depressed, I said to myself, ‘Really, what's changed?’” he says. “’We're all going to die sometime, so it's more about what we do with our time while we're alive. I decided that I needed keep going with what I wanted to do, and that was to race marathons and travel and enjoy life.”
Becoming a Parathlete
Bill then threw himself into becoming a parathlete, adopting the mantra that, for him, ALS wouldn’t just stand for “amyotrophic lateral sclerosis.” It would also represent the “Adaptive Lifestyle” he was undertaking. While running was no longer an option, he began learning to ride long distances in a racing wheelchair and hand-cycle. In the year and a half since he began training, he’s tackled three marathons and half marathon – including the London marathon, another race on the list of major marathons. Next year, he plans to check off his final two, in Tokyo and Boston.
Bill says there were many practical hurdles to overcome in adapting to his new reality – things like learning to operate his new equipment and training to use his arms rather than his legs. However, even more challenging was learning to rely on others to help him achieve his goals.
“With ALS, the ability of your body to function in a particular way is always changing,” he says. “When I first started out, I could walk, and I was able to get myself in and out of my equipment. Now, I'm losing the strength in my lower limbs and my front core. I'm chair bound. Making transitions is a lot harder. I’ve had to grow in my heart and mind to open myself up to help from other people, to ask questions and learn new things. I'm trying to remain as independent as possible, but I keep myself open to help from everyone.”
Supporting ALS TDI and Participating in the ARC Study
While it’s been an important part of processing and living with his diagnosis, Bill’s mission isn’t just about his own personal achievement and growth. He’s also sharing his story to help raise funding for the essential research to end ALS at the ALS Therapy Development Institute (ALS TDI). Bill says that it’s important to him to support an organization that is moving our understanding of the disease forward – and one that’s allowed him to help participate in research.
“When I was trying to understand what ALS meant for me, I found myself really attracted to the science,” he says, “I just found it fascinating. I decided that I didn't want to write a book. I didn't want to do a documentary. I don't want to start a charity. I decided what I wanted was to find a way to be a lab rat so I could help in some small way.”
As a participant in ALS TDI’s ALS Research Collaborative (ARC) study, Bill contributes essential data to help researchers learn more about the disease. He has submitted blood samples, filled out surveys, recorded changes in his voice over time, and undergone genetic testing. Along with the data submitted by hundreds of other ARC participants, Bill’s contributions help inform research at ALS TDI, and are shared with researchers all over the world through the ARC data commons. He is even able to view all his data through an online portal.
“I feel good that I'm able to give back to the community with my data,” says Bill. “And I also love that I can track my progression over time. I'm happy and proud to see the expansion of the ARC program and the fact that it's open science. I think it's going to take the whole community to figure out what's going on with ALS, how to discover ways diagnose ALS, and what we can do to treat it and to cure it.”
In the coming months, Bill will prepare to finish his last two of the six major marathons and plans to continue to travel to new places with his wife for as long he is able. He also plans to go back to college. While he already has a bachelor’s degree in communications and master’s in instructional design, he wants to indulge his newfound interest in the science of ALS by learning more about biology and chemistry.
“I'm just going to get whatever I can out of this body,” he says. “Whatever it can give me I will take it and I will use it. And I'm going to feel good with whatever I do, as long as I just keep pushing myself to the edge.”
What to do next: