When Ken Gomez retires in June, 2011, his decades of training will help him as he bikes 4,200 miles across the country in an effort to create awareness about Charcot-Marie-Tooth disease (CMT) and to raise funds for the Charcot-Marie-Tooth Association's STAR research initiative. He is planning to start in Anacortes, WA, and end in Bar Harbor, ME.
Bicycling across the country would be an extraordinary feat for anyone, but it will be an even greater triumph for Ken, who has CMT. So does his son Paul, who is a vented quadriplegic because of his CMT. Many of Ken's relatives also have the disorder, so he has personally witnessed the challenges that people with CMT face, and he is determined to do what he can to make their lives better.
Charcot-Marie-Tooth is the most common neuropathy in the world, yet it is not well known. Contrary to the name, it has nothing to do with teeth.
“It was discovered by three French guys that couldn't come up with a better name than their last names,” Gomez joked.
Over 2.6 million people are affected by the disorder, where people slowly lose normal use of their feet, legs, hands and arms as nerves to them degenerate. The muscles in the extremities become weakened because of the nerves' degeneration.
I had the pleasure of meeting Ken when he came to one of our upstate NY CMT group meetings. This is a wonderful opportunity to double your contribution, since the Paul Flynn Charitable Trust will be matching up to $22,000 of donations made to Ken's Ride.