At age 6, when most kids are playing with their friends or getting scolded by their parents, Amy Jenkins was diagnosed with Charcot-Marie-Tooth disease.
Named for the three physicians who first identified it in 1886, Charcot-Marie-Tooth disease is caused by mutations that affect the normal function of the peripheral nerves. The degeneration of motor nerves causes muscle weakness and atrophy in the extremities (arms, legs, hands or feet). In some cases the degeneration of sensory nerves results in a reduced ability to feel heat, cold and pain.
Wednesday afternoon, as individuals, organizations and businesses are raising funds for the Muscular Dystrophy Association, Jenkins was at Edmond’s Fire Station 1, located next to the University of Central Oklahoma campus, to talk about her story.
Jenkins said several relatives including her father have the same disease, which was the closest fit to their disorder. Genetic testing confirmed a difference. She said a cure for her disease hasn’t been found yet, but MDA-funded research is making a difference.
“Try and imagine as an individual paying for six years of research at $86 a minute,” Jenkins said. “That’s not feasible. So having that is hope toward finding a treatment, toward finding assistance and hopefully a cure some day.”
MDA is the world’s largest non-governmental sponsor of research seeking the causes of, and effective treatments for, more than 40 neuromuscular diseases affecting more than 1 million Americans like Amy Jenkins. Services include clinics, equipment assistance, caregivers, education resources, advocacy, MDA transition services and summer camps.
“The camp is absolutely the most amazing experience you’ll ever have,” said Jenkins, who went to the camp as long as she was eligible age-wise.
Local MDA fundraising coordinator Noel Lundy said it costs $800 per child for one week of camp.
The MDA Labor Day Telethon — now called MDA Show of Strength — will be a three-hour prime-time broadcast special that will air at 7 p.m. Sunday. It will feature performances and celebrity appearances from Hollywood, Nashville and New York. Locally the program can be seen on KOCB-TV 34 or via live stream on mda.org.
Firefighters around the country will be out at street intersections asking citizens to help fill the boot. In Edmond, they’ll be at the Second Street-Bryant Avenue intersection after 5 p.m. Thursday and Friday, and at random times on Saturday, Sunday and Monday morning. Last year, generous area residents helped break the statewide donation record.
“It’s an honor to be able to go out and collect for such a cause, to be able to have an impact in the community, people we don’t know,” said Edmond Fire Maj. Gary Dill, the EFD’s Fill the Boot coordinator. Being able to have an impact in their lives is pretty cool. When we collect for the MDA we’re collecting for people like Amy.”
Lundy said 77 cents of every dollar donated to the MDA goes toward research, services and information programs. In Oklahoma, nearly 2,000 people currently receive some kind of assistance, Lundy said.
If for one reason or another you won’t be able to toss some spare change into a firefighter’s boot, pledges and contributions may be made to the MDA by phone (1-800-FIGHT-MD), text (“MDA” to 20222) and online at mda.org during the broadcast.
Professional firefighters and the International Association of Fire Fighters are the No. 1 fundraising organization for the MDA. Nationwide in 2011, firefighters raised more than $27.1 million to advance the MDA’s lifesaving mission.
MDA is the first nonprofit organization to receive a Lifetime Achievement Award from the American Medical Association “for significant and lasting contributions to the health and welfare of humanity.”
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