Firefighters, patient humanize muscular dystrophy

EDMOND 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 Edmonds 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 hasnt 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. Thats not feasible. So having that is hope toward finding a treatment, toward finding assistance and hopefully a cure some day.

MDA is the worlds 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 youll 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, theyll 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.

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Firefighters, patient humanize muscular dystrophy