Although they look healthy, Michele Kekac of Shelton and Doug Sutherland of Trumbull, struggle with Charcot-Marie Tooth (CMT) disease, a rare inherited neuromuscular disease. \u201cIt\u2019s often called the \u2018invisible\u2019 illness,\u201d Kekac said. To raise awareness about CMT, which affects 2.6 million people worldwide, and to support the Charcot-Marie-Tooth Association (CMTA) Star Research program, Kekac has organized a fund-raiser on Friday, Sept. 13, at 6 p.m. at the White Hills Fire House, 2 School St., Shelton. \u201cA Slice of Hope for CMT: A Pie Night\u201d will feature slices of pizza pies and an assortment of specialty dessert pies donated by local businesses. Raffles, DJ dance music and non-alcoholic beverages are included in the $15 admission price. The event is co-sponsored by CMTA and the Southern Connecticut CMT Support Group. CMT Awareness Month Sutherland, an engineer, is active on the Trumbull Democratic Town Committee. Based on Sutherland\u2019s request, Gov. Dannel Malloy recently declared September as CMT Awareness Month in the state. There currently is no cure or treatment for this progressive degenerative disease. Although Kekac is hopeful that medication to slow down the disease\u2019s progression will soon be approved, she said $25 million is needed for CMT research. Was diagnosed in 2005 A 32-year old Brazilian native, Kekac lives in Shelton with her husband, John, a Shelton police officer. She was diagnosed with CMT in 2005 after seeking medical assistance for pain she had been experiencing in the bottom of her feet. \u201cI used to feel pain with every step I took,\u201d Kekac said. \u201cIt started in my thighs and I had cramping in my calves.\u201d When she was first diagnosed with CMT, Kekac\u2019s lifestyle didn\u2019t change. She finished college, commuted from her hometown in New Jersey to a job in Manhattan, and enjoyed a long-distance romance with her future husband, John, who lived in Connecticut. Unfortunately, Kekac\u2019s symptoms got worse. In 2010 she decided to undergo two major reconstructive surgeries on her feet. \u201cThe surgeries helped immensely,\u201d Kekac said. Overexertion is an issue However, she continues to feel chronic pain in her legs. Kekac tires easily and her balance is \u201cnot great,\u201d she said. \u201cI can\u2019t walk for extended periods of time without getting tired,\u201d Kekac said. She has to be careful not to overexert herself while performing every day chores, such as grocery shopping and cooking a meal. \u201cThe amount of time it takes me to recover from overexertion is a day or two,\u201d she said. To combat her fatigue, Kekac recently acquired a scooter. She also takes care of her body through yoga, pool therapy and physical therapy. Impact can vary CMT affects people differently. \u201cIt\u2019s highly variable from person to person,\u201d Sutherland said. \u201cThis is frustrating because you don\u2019t have a lot of role models.\u201d Like Kekac, Sutherland was diagnosed in his 20s. Because his feet also are affected, Sutherland began to wear a brace on each leg 25 years ago. However, Sutherland doesn\u2019t experience the pain or chronic fatigue that Kekac continues to feel. Sutherland was diagnosed with CMT in the 1980s when he asked his primary care doctor how to strengthen his \u201cweak ankles.\u201d More than 30 years ago, very little was known about CMT, he said. \u201cThe doctor said he\u2019s sending me to an orthopedist and then the orthopedist said I\u2019m sending you to a neurologist,\u201d Sutherland explained. Issues with feet and hands Although Sutherland sought a second opinion, a different neurologist confirmed the original diagnosis. At first, he used custom orthotic foot beds to alleviate the pain in his feet. Sutherland then purchased an ankle-foot prosthesis brace to help lift his foot. The braces cost $1,500 each; only some insurance plans will pay for them. \u201cIf you don\u2019t look at me closely, you wouldn\u2019t notice I have an odd gait,\u201d Sutherland said. Sutherland\u2019s hands also are affected by the disease. He has difficulty with tasks requiring fine finger control, such as pinching. \u201cPicking up a paper clip is challenging,\u201d he said. Appreciating the little things Sutherland said many people who have CMT are high-achievers because they have to be focused and persistent. \u201cI think CMT has a lot to do with the kind of person I am,\u201d Sutherland said. \u201cI appreciate the little things in life. I try to help others because you don\u2019t have to look far to find people that are worse off than you are. \u201cMy CMT makes me keenly aware that even though someone looks perfectly fine on the outside, you never know what hidden challenges they are facing on the inside,\u201d he said. Despite their handicaps, Kekac and Sutherland are hopeful that continued research will help those who have been diagnosed with CMT. For more information about \u201cA Slice of Hope for CMT: A Pie Night,\u201d call Michele Kekac at 203-513-8268.