Amyotrophic Lateral Sclerosis (ALS) is generally a fast-progressing disease, with the average lifespan from onset to death usually only three to five years. However, for Charlie Hargett’s family, it moved with a truly horrifying speed. When ALS first came into Charlie’s life, he barely had time to wrap his head around what it was before it took his mother, Debra Jean Hargett, from him.
Charlie, an air force veteran and consultant living in the Denver, CO area, says it’s hard to know exactly when things started. Debra was never one to draw attention to herself or complain about anything that was ailing her. But, in early 2018, she found she was unable to lift her arm above parallel – something that finally moved her to seek the advice of a doctor. They found a slipped disc in her back, which they assumed to be the root of the problem. However, soon after the surgery, it became clear something else was wrong.
“She went in for rehab and physical therapy to get herself back to full strength, and she started heading downhill pretty quickly,” Charlie remembers. “She ended up being diagnosed with ALS very near the end. She made it to December of 2018 before passing away. It was just a very rapid decline from the time she went to the surgery to when she was in the ICU on a trach.”
To add to the shock of his mother’s sudden passing, there was also the news that Debra carried a hereditary ALS-related mutation in her SOD1 gene, meaning her children were potentially at risk for developing ALS themselves. Charlie, who previously had no idea that there was a history of ALS on his mother’s side, discovered that he was part of a familial ALS family.
It was that discovery that first led him to encounter the ALS Therapy Development Institute (ALS TDI). After looking into options for genetic testing for potential ALS-related gene mutation carriers, he found ALS TDI’s Precision Medicine Program. He traveled to Massachusetts, along with his brother, to receive genetic testing, and find out if they and their families might also be at risk for developing ALS.*
“It gave us tremendous peace of mind because we found out that neither one of us had the same gene that my mom had,” Charlie says. “It was that openness to bring us into the fold and share a ton of information, and the mission of ALS TDI to find a cure and improve the ability to diagnose and find treatment for ALS, that just really resonated with me. The payback is just immeasurable. I couldn't do that in a lifetime.”
To help support the organization that helped him in his time of need, Charlie is organizing a golf tournament in Denver this Summer as part of ALS TDI’s Driving for Life program. The tournament, which will take place on August 8th, 2022, will raise much-needed funds to support the critical research at ALS TDI. This will be the Driving for Life Colorado’s second year, and Charlie says it’s been highly anticipated, especially after the COVID-19 Pandemic caused the event’s cancellation in 2020 and a much smaller scale tournament in 2021.Of course, beyond just raising money for ALS TDI, the tournament will also honor the memory of Debra Jean Hargett – a fact that is made even more meaningful for Charlie with Mother’s Day coming this weekend.
“ALS was it just hit her hard and fast and watching her deal with that was extremely brutal,” Charlie says. “When Mother's Day comes around, I just try to make a concerted effort to think about things other than her passing of ALS. I think about when my dad was stationed in Japan and we went to Disneyland Tokyo and our time there. I think about her working her tail off to get through radiology school so she can become a radiologist. She was a big fan of hummingbirds. She loved having hummingbird feeders around her house and watching them.
“When Mother's Day comes around,” he continues, “I just take the opportunity to remember all the big and little things that made up who she was and try not to focus too much on the fact that this brutal and uncaring disease is what took her away from us.”
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*Please note: ALS TDI's PMP now only enrolls individuals who have been diagnosed with ALS or healthy gene carriers with a previously confirmed ALS-related mutation.
