Pedaling to find cure
Cazenovia couple to ride 600 miles to raise awareness of rare disease
By Willie Kiernan
There's an old phrase - it's like riding a bike. For Linda Johnson, walking and talking used to be like riding a bike, but now, riding the bike has become easier.
"Riding 600 miles is not going to be a walk in the park, but for Linda, a walk in the park will be out of the question in a few years, unless a cure is found," said Andy Johnson, Linda's husband.
Linda Johnson has a rare disease called Friedreich's Ataxia, a degenerative genetic disorder that causes deterioration in nerves that connect the brain with muscle tissue. Because she can't feel her tongue or legs, she has trouble speaking and walking. Due to the rarity of the disease, only 6,000 cases in the country, there is little attention paid to it regarding research and finding a cure. In an attempt to raise awareness and funds, Linda and Andy Johnson are riding bikes with a group from Sacramento, California to Las Vegas, Nevada.
"I hadn't ridden a bike in 20 years," Linda Johnson said.
The ride, inspired by Kyle Bryant who made the trip from California to Tennessee last year to speak at the National Ataxia Foundation convention, will go from March 15 to 28, if they can average 50 miles per day.
"This guy Kyle rode for two months last year to raise awareness," Linda Johnson said. "He also raised $40,000."
After finding Bryant on the Internet, Johnson contacted him via e-mail and arranged to join him and his family in a much shorter ride because the NAF convention is being held in Las Vegas this year. The next step was finding the bike, a recumbent three-wheeler or trike as she calls it.