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Cathy Sherman: ALS group helps those in need



Sarah Tucker still chuckles at a time she took dictation from her friend Keith Worthington, who had difficulty speaking because he had ALS, or Lou Gehrig’s disease.

“There was one word I just couldn’t understand no matter how many times he said it.”

Tucker and Worthington’s wife, Sue, went through the alphabet on a letter board. Worthington nodded at each correct letter.

Punxsutawneyphil.

Tucker still couldn’t make sense of it.

“Keith started laughing so hard, I thought we were going to lose him,” Tucker says. “He was joking about Groundhog Day.”

Keith Worthington was the kind of man who made you forget he was in a wheelchair and on a respirator. You were happy after you met him.

I met Worthington in 1982 at the KU Medical Center where I worked. He was helping to open an ALS Research Center there. Despite his condition, he was cheerful and glad to be helping others. Seeing the terrible physical toll ALS took, I was grateful the disease hadn’t touched my own life. Years later, my gratitude took a different form when my father was diagnosed with ALS.

Worthington was a successful Kansas City businessman and an award-winning tennis player when he was diagnosed with ALS in the 1970s. He found little information about ALS and few places to get help so he and Sue created an organization to help people with ALS and to raise money for research.

That organization, which later joined the national ALS Association, is 30 years old this year. Now called the Keith Worthington Chapter, it has offices in Kansas City, Wichita, Springfield and Omaha. It’s one of over 40 chapters nationwide dedicated to helping people with ALS and to finding a cure for the progressive neurodegenerative disease.

When my father was diagnosed with ALS in the spring of 1995, The Keith Worthington Chapter’s Wichita office made it possible for my parents to accomplish more in my father’s final months. As he became more paralyzed, my father hurried to finish the latest of the rocking horses he built for his grandchildren. With my mother, he went on a farewell tour that summer to see far-flung relatives and friends.

His disease progressed so rapidly that he moved from cane to walker to wheelchair in just a few months. Through this dizzying and distressing time, the chapter provided information, equipment, care and a support group to my father and our family.

The chapter has many devoted supporters, including Worthington’s long-time friend George Brett, who promised Worthington he’d support the cause until a meaningful treatment or cure was found.

“It’s a calling for many of us,” says Sally Dwyer, who’s the chapter’s program director. “Even though there’s no known cause or cure, there is hope. Research has really blossomed in the past 10 years.”

The chapter works with the KU Medical Center’s ALS Clinic, one of ALSA’s 28 Centers of Excellence.

The chapter helped to get the waiting period shortened for ALS patients to get Medicare benefits. It’s pushing for a National ALS registry so that researchers can learn more about people who get ALS. This will help to learn more about the causes of this very complex disease, Dwyer says.

The ALS Association is the largest funder of ALS research. Kansas City fund-raising events include the Night of Hope on May 3 and The Joe McGuff Classic Golf Tournament on May 19.

Worthington died in 1984, but his legacy continues to grow. Thanks, Keith.

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