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Poker Run to help ill local boy
Southern Thunder Cruisers sponsoring Saturdays benefit
Jason carpenter for web
Jason Michael Carpenter is pictured with his father Jason at a fundraiser for the Muscular Dystrophy Association earlier this year. Four-year-old Jason suffers from CMT1E, a rare nerve disorder. - photo by Special

    For their eighth annual Poker Run on Saturday, Statesboro’s Southern Thunder Cruisers hope to help offset the mounting medical bills of a local family whose 4-year-old son suffers from a rare nerve disorder.
    All proceeds from the Poker Run will benefit the family of Jason Michael Carpenter II, who suffers from CMT1E, a type of Charcot-Marie-Tooth neuropathy. The family left for their yearly visit to the nearest specialist on Tuesday, traveling to Wayne State University in Detroit, said Christie Carpenter, Jason Michael’s mother.
    The family will be back in time for Saturday’s event at the Brooklet Community Building. Registration for the event begins at 9 a.m. and the first bike will roll out at 10 a.m. and the last at 11 a.m. Participants will make four stops along the ride, drawing cards at each. The ride will travel country roads making stops at Statesboro Yamaha on Highway 80 East, Stilson’s Country Store, and Leefield’s Zip-n-Food.
    Participants must pay $15 for the first hand and $20 for each additional hand. At the end of the ride a prize will awarded for the best and worst hands, Jerry Brown, president of Southern Thunder Cruisers, said.
    In addition to the poker run, there will also be a cake and raffle ticket sale, as well as a hot dog lunch, Brown said.
    “It’s just a fun game to raise more money for the family,” Brown said. “You don’t have to ride a motorcycle, everyone is invited.”
    Jason Michael was diagnosed with CMT1E when he was 18 months old. After undergoing multiple genetic tests, doctors performed a muscle biopsy to reach a diagnosis, Christie said.
    CMT1E is a peripheral nerve disorder that involves nerve and muscle wasting and sensor loss. It accounts for less than 5 percent of all CMT1 cases, according to Gene Reviews, which is sponsored by the National Institute of Health.
    “He’s the youngest person his doctors have seen with the disorder,” Christie Carpenter said. “It usually has a much later in life onset.”
    Jason Michael is only able to attend physical therapy once a month during the school year, because the family’s insurance covers 20 visits per year.
    “The doctors there are wonderful,” Christie said. “Our goal now is just to keep him active, because the more active he is the better it is for him.”
    Currently there is no cure for CMT1E. The disorder causes a loss of mobility in the arms and legs so Jason Michael must use a walker. He is expected to be confined to a wheelchair by the time he becomes a teenager.
    “He goes to preschool and does everything a little boy does, he just uses a walker to get around,” Christie Carpenter said. “He’s feisty and doesn’t let anything stand in his way.”
    Brown called the Southern Thunder Cruisers is a family-oriented, non-profit motorcycle riding club with an emphasis on community service.
    “A group of guys got together and just wanted to have clean fun,” Brown said. “It didn’t matter what kind of motorcycle you had.”
    The seven founders have grown to a group of nearly 50 active members, who still have a vision of a community outreach. The club helps other local communities and families in need, Brown said.
    “They are all wonderful people and truly care about the causes they ride for,” Christie Carpenter said. “We’ve never done anything like this before, but [Jason Michael] likes motorcycles so it should be right up his alley.”

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