ALS: Courage, Hope

Golf legend Tom Watson, left, with Beckie Cooper, center, talks with attendees at the ALS Association\'s 19th annual Night of Hope dinner on May 3, 2008, in Overland Park, Kan. Watson presented the first Tom Watson Award for Courage to Cyndi Starke, who has ALS.  Watson\'s long-time friend and caddie Bruce Edwards was stricken with ALS.  Cooper is the executive director of the ALS Association Keith Worthington Chapter.

 

A Latter-Day Gehrig Survives, and He Demands to Be Heard,” link to a story about ALS from the New York Times

 

A few people you meet will have a huge impact on your life, even when you don’t realize it at the time.  Keith Worthington was such a person.  I met Worthington in 1982.  His courage and dedication greatly affected me, but I had no idea then how his mission would later be so important to my family. 

I was assigned to write a news release about a new center for a disease I knew little about: ALS. Frankly, at the time I was glad that meeting him was just part of my job.  I was grateful not to have any personal acquaintance with the disease he was fighting.     I’d heard the story about Lou Gehrig retiring from baseball years ago because of a paralyzing disease that was later named after him, but when I met Worthington I saw the full expression of that disease. Worthington was totally paralyzed and on a ventilator. ALS is a terrible, progressive neurodegenerative disease, and there isn’t a cure. Yet, he radiated cheerfulness.

Worthington was at the University of Kansas Medical Center, where I worked, to help open a new ALS Research Center.  When he was diagnosed, he found little help or information anywhere, and he created, with his wife Sue’s help, 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 and is named the Keith Worthington chapter.  It’s one of more than 40 ALS Association chapters nationwide.

Worthington died two years after I met him, but I didn’t forget him or his courage to help people even when he knew he would never benefit himself.  When my father was diagnosed with ALS in 1995,  I felt punched in the gut, shocked, in denial.  I immediately thought of Worthington and knew the fate that awaited my father.  But I also knew that because of Worthington, there were care, support and equipment resources available to my father.

The Keith Worthington chapter has many devoted supporters, including baseball legend George Brett, who was Worthington’s friend, and golf legend Tom Watson, whose long-time friend and caddie Bruce Edwards died from ALS.

 

 

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1 Comment

Filed under ALS, Golf, Health, Life, Sports

One response to “ALS: Courage, Hope

  1. It’s been several years when you met him. I think he is someone really brave despite of his disease. It is good to hear that he contributed a lot for those people who got the same disease. Too bad he passed away. Thanks a lot to him.

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