NEW LENOX, IL — A New Lenox woman with a rare, progressive and debilitating neuromuscular disease is leading an effort to raise awareness of its impact.
Doreen Pomykala suffers from Charcot-Marie-Tooth Disease, a hereditary condition that causes progressive nerve damage and muscle weakness in the extremities. Diagnosed as a child, Pomykala has endured its symptoms the entirety of her life, unable to walk without braces on her legs.
Undaunted, on Sunday, Sept. 29 she will lace up her sneakers and head to Hickory Creek Preserve in Mokena, where she’ll lead the Chicago Walk 4 CMT, an effort to bring together those with the disease, supporters, and community members.
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Pomykala, 63, who taught New Lenox kindergarteners for years before she retired, has participated in the walk for 20 years, but this is her first year leading it. Her hope is to educate people on the disease.
“One of the biggest reason we’re holding this walk,” she said, “is because people don’t know what it is.”
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Pomykala, though, knows it all too well.
“I have had it my whole life,” she said. “I never could run or jump in school. I couldn’t run with my friends. As I got older, and it affected my hands, to write became difficult. I can’t button buttons, I don’t have the dexterity to do it … opening jars, opening paperclips.”
She was also a very late walker, she said. Pomykala inherited it from her mother, and carried a 50/50 chance of passing it on to her own offspring. One of her two daughters was diagnosed with it, as were two of her grandsons.
“In one of my grandsons, it’s quite debilitating,” she said. “He’s 4 years old, he’s in braces, he still has trouble walking.”
The disease affects each person differently, she said, but typically starts in the feet and hands. It causes abnormalities in the nerves that supply a person’s feet, legs, hands, and arms. It affects both motor and sensory nerves, according to Johns Hopkins Medicine.
“The nerves stop working correctly, the muscles deteriorate,” she said. “You can’t feel your feet or your hands. It usually affects your feet first, and then your hands. It moves up. It’s very different for every person. We’ve identified 100 different variations of CMT.”
CMT affects an estimated 1 in 2,500 people in the United States, and although considered a rare disease (under 200,000 people), experts believe the number to be much higher, reports the Hereditary Neuropathy Foundation. There are an estimated 2.6 million people affected worldwide. CMT is considered to be one of the most common of the 7,000 rare diseases affecting children.
The Chicago Walk 4 CMT has led Pomykala to four individuals—not related to her—with CMT in the Lincoln-way area, she told Patch.
It’s free to participate in the event. The walk starts at 10 a.m., with check-in opening at 9 a.m. at Hickory Creek Preserve, Hickory Creek Hollow Shelter, 10537 LaPorte Rd. Light refreshments will be served in the morning. A picnic and raffle will be held after the walk. Hot dogs, brats, chips, and water will be provided. Attendees are free to bring a dish to pass, or their own picnic lunch and drinks. Cornhole game and some kids’ yard games will also be set up.
The walk ranges in length, from one quarter mile on flat, paved trail or up to several miles along the relatively hilly Hickory Creek Bikeway. Participants can walk, don’t walk, or ride as far as they’d like.
Participants can sign up online as an individual, as part of a team, or form their own team. Pomykala’s team is Team Doreen. Registration is free with the option to donate and/or fundraise. Those who donate or fundraise $100 or more will receive an official 2024 CMTA T-shirt.
A donor will match contributions up to $200,000, Pomykala said.
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