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On Sunday, May 5, 2013 among the crowd of 32,000 cyclists expected to participate in New York City’s TD Five Boro Bike Tour will be two busy New Yorkers cycling to raise awareness of and funds for Charcot-Marie-Tooth. Margie Loucas and Valerie Tornambe met through mutual friend Allison Moore when Allison’s and Valerie’s children were in the same preschool. The moms often took their kids for lunch to Burger Heaven, the Manhattan restaurant owned by Margie’s family, where she and Valerie became friends.Margie, a childhood friend of Allison’s from Long Island, now lives on Manhattan’s Upper East Side and considers her involvement with CMT a natural extension of their friendship. She recalls how, when training to run the 1996 NYC Marathon, Allison was diagnosed with cancer. Treatment, while successful in obliterating the cancer, triggered a rapid onset of CMT. “By 2001” Margie remembers “Allison grabbed some friends and family, held meetings and formed the Hereditary Neuropathy Foundation (HNF) to promote CMT awareness. She said ‘I’m going to do something about this’ and she did, even while we were starting our families.” Margie, now a mom of three, served on the board of HNF from inception until last year.The TD Five Boro Bike Tour, a 40 mile traffic free bike ride through New York City, really appeals to Margie, an athlete. “I’ve been interested in riding as a model for others to get involved. When I do it I feel like I’m giving back. You have to give back. For me, it is about gratitude. I’m a big believer in what goes around, comes around,” meaning putting forth positive energy and helping others. After rising every day at 5:30am to prepare her children for school, Margie fits in an hour of cardio exercise from 7-8am, before working full-time at Burger Heaven. She leaves the restaurant in time to be home for after-school activities, homework and dinner. “Family and friends are so important” Margie explains, “you only have the kids a short time in which to guide them and,” she adds “to have fun.”
The TD Five Boro Bike Tour is a unique opportunity to ride across bridges and down highways normally jammed with trucks and cars. Ending in Staten Island, the route takes cyclists 228 feet high above the Narrows section of New York Harbor via the Verrazano-Narrow Bridge. “Last year, after cycling for 38 miles, we approached the Verrazano Bridge” recalls Valerie laughing at the memory. “It is a steady incline, one mile uphill. We all got very quiet. Then we’re huffing and puffing and groaning. Then we hit the top and coasted all the way down to the finish line! That descent is a big payoff. It is such a special ride.”In addition to raising her family, Valerie along with Lily, her 120 pound Bullmastiff, volunteers in a canine assist therapy program through the Good Dog Foundation. They visit hospitals, juvenile jail, senior homes, halfway houses and programs for the autistic as well as reading programs throughout the city, offering emotional support in what Valerie calls an “in the moment visit.” She further explains, “Often a child who is afraid to read will feel comfortable reading to a dog. Or people who are sad or upset will tell me ‘you made my day.’ It feels really good to say we went out and really did something that day that mattered to people.”