Western Springs Man Makes National Impact with ALS Advocacy

Downtown Western Springs and La Grange will be speckled with yellow Friday and Saturday as more than 50 golden-vested volunteers collect donations for the Les Turner ALS Tag Days.

While the donations will benefit people with ALS throughout the Chicago area, the volunteers will have in their hearts one extraordinary local man.

Western Springs firefighter and Tag Days organizer Dick Jacobson was diagnosed with ALS, also known as Lou Gehrig’s disease, a little more than a year-and-a-half ago. He organized the first local Tag Days event last year, and since then has taken his advocacy for all who suffer from the neurological disorder to the national level.

Jacobson testified during an FDA hearing in Washington, D.C., in February, about the urgent need for a treatment.

“Our minds and thought processes remain fully intact as we increasingly learn to live in a straightjacket, unable to speak or eat,” he said at the hearing. “… How much longer does the ALS community have to watch the very slow progress in resolving this disease?”

ALS progresses rapidly, diminishing muscle function as the neurons in the brain that control movement die off. The cause remains very much a mystery, nearly 150 years after the first patient was diagnosed. And so, too, does a cure elude researchers.

Jacobson was still working, driving and living a moderately normal life at this time last year. Now, confined to a wheelchair, he’s on disability with minimal use of his arms and virtually no use of his legs. His breathing is impaired and he relies on others to help him with most of his day-to-day activities.

It took two weeks of planning for him to get to D.C., but his neurologist convinced him it was worth the struggle.

“We’ve got to find solutions to this disease,” Jacobson said. “It’d be nice if I’d get to take advantage. I doubt I will. But we’ve got to end this thing.”

The Les Turner Foundation recognized Jacobson for his advocacy by naming him patient of the year. The Muscular Dystrophy Association ALS Division featured him and his family in a video at its annual fundraiser.

And dozens of volunteers will be on the streets this weekend, collecting change and dollar bills in support of his cause. Jacobson is deeply touched by the effort.

“It’s fantastic,” Jacobson said. “It’s really humbling in a lot of ways, but it’s just a testament to what a strong community this is.”

Earlier: 

• Local Firefighter Featured in ‘Many Faces of ALS’

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