JACKSONVILLE, Fla — A Jacksonville man is using his feet to end a rare, incurable disease that he lives with. Tim Nightingale is leading the “CMTA Jacksonville Walk 4 CMT” at the Jacksonville Mayo Clinic on Saturday, September 13, at 9 A.M.
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Nightingale says Charcot-Marie-Tooth Disease (CMT) is a “hereditary, neuromuscular disease that causes the peripheral nerves to communicate poorly to the muscles, and it could eventually lead to atrophy.” He adds that some of the symptoms of CMT include drop foot, walking with nerve pain, a loss of sensation in the muscles, and it can also affect your hands and arms. According to the Charcot-Marie-Tooth Association (CMTA), the disease affects 135,000 people in the U.S., including an estimated 700 in the Jacksonville metro area.
Nightingale and other participants will walk a half-mile loop at the Mayo Clinic in an effort to raise money for CMTA. “One thing about CMT [...] it really affects how you walk, and how you do several things depending on the severity of the disease,” says Nightingale. The walk is no easy feat for Nightingale, “I would say for an average person, it would probably take maybe a few minutes. Someone like myself, it will take ten minutes.”
You can register for the event on the CMTA website. You can learn more about the disease, you can visit the Mayo Clinic website, and if you have any questions about CMT, you can email the CMTA at JacksonvilleCMTABranch[at]CMTAUSA.org. To learn more about the disease and what life is like with CMT, you can listen to the full interview with Tim Nightingale.
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