“Devastating” and “terminal” seem to be, unfortunately, the most appropriate adjectives to describe amyotrophic lateral sclerosis — just ask anyone who’s had a personal experience with the illness. It’s why Tucson’s Jim Himelic Foundation understands that it must fight to change “devastating” to “manageable” and “terminal” to “curable.”
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On Oct. 3, the foundation is hosting its 14th Annual Jim Himelic Memorial Golf Classic at the Omni Tucson National Resort and expects to meet its $1 million goal for research to eradicate the disease.
“ALS is a progressive disorder of the motor neurons,” said Dr. Katalin Scherer, a neurologist who specializes in neuromuscular disorders and medical advisor to the Jim Himelic Foundation. “Those are the nerve cells that move every voluntary muscle in your body. As a progressive disorder, it eventually paralyzes every muscle in your body to where the only thing that you can do is move your eyeballs.”
Former UA alumnus and Pima County Juvenile Court judge Jim Himelic was diagnosed with ALS in 1996 when he was 49. His former wife, Diana Himelic Dawley, said his first symptom occurred when Himelic started to trip on his left foot while jogging. The neurons in his left foot and leg were dying. Later, a neurologist told him he had ALS.
“When he was first diagnosed, I didn’t even know what ALS stood for,” Dawley said. “It’s a terminal disease and it was really hard to face because you don’t think you are going to get it. It was a bolt that hit us really, really hard.”
There is still a lot to be learned about ALS today. What needs to be known is what triggers the disease, said Dr. Holli Horak, a neurologist and medical advisor to the Jim Himelic Foundation.
There also needs to be available tests for diagnosing ALS before the patient presents any weakness, according to Scherer.
“Think about a boulder rolling down Mt. Everest,” Scherer said. “If it was at the very tippy top teetering, you may be able to stop it from going down the mountain if you could wedge it real quick.”
Curing ALS once it shows symptoms is like stopping a rushing boulder by throwing pebbles at it, Scherer continued.
The average life expectancy for people diagnosed with ALS is two to three years, Horak said. Himelic was able to live four years after his diagnosis. In 2001, a year after his death, the foundation started its first charitable golf tournament in Himelic’s name.
“The first year we only made $55,000,” Dawley said. “Last year we made $86,000.”
With only $82,000 left until the foundation meets its $1 million goal, Dawley is handing over her position to her six children after this year. In spite of this bittersweet news, Dawley is excited about the recent ubiquity of the ALS ice bucket challenge — which has now raised over $100 million for the ALS Association.
“For such a long time, ALS has been the underdog when it comes to receiving charitable donations,” Dawley said. “Finally, ALS [has been] given the awareness that is so desperately needed.”
—Follow Dara Farhadi @Dara_Farhadi