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SparkleSister Roxanne Carnicom started walking nine years ago. Frustrated with her weight loss plateau and with the encouragement of her active duty sons—one who trained for the Marine Corps Marathon while deployed in Afghanistan—she transitioned to running.
“My greatest wish was to run with my kids, who were deployed in Afghanistan at the time.” In 2010, she ran her first 5-miler with her sons Richard and Derek, who were both stationed at Fort Belvoir, Virginia. From there she completed a couple of 10ks and then a half marathon. She has now completed five marathons and 19 half marathons. Roxanne said she and her sons try to run together every chance they’re in the area.
Through Roxanne’s increased physical activity and Weight Watchers, she lost 50 pounds and has kept it off for six years. But that’s not the most impressive part. Roxanne runs every single day! She’s currently on Day 974 of her running streak. Though her desire for a healthier lifestyle got her started, she now has a much more important reason to put on a SparkleSkirt and lace up her running shoes day after day.
Roxanne runs for her grandchildren who have Fragile X syndrome, a genetic condition that causes intellectual disability, behavioral and learning challenges, and various physical characteristics.
“Before Liam’s diagnosis in 2011, we had never heard of Fragile X. It took some time to understand; however, when our other grandson, DJ was diagnosed in 2012, we wanted a way to do more for them and others, to bring awareness to Fragile X. The family discovered FRAXA, a nonprofit, tax-exempt organization committed to finding a cure for Fragile X.
Before the Massachusetts based organization was founded in 1993 by parents who discovered their newborn sons had Fragile X syndrome, the US government was only spending $30,000 per year to find a cure. Since its inception, FRAXA has funded more than $25 million in biomedical research, yielding discoveries that are changing the lives of families coping with Fragile X.
According to its website, FRAXA is one of the most efficient and effective charities in the world, with management and general expenses under four percent and research and expenditures at 86 percent.
Impressed by FRAXA’s efforts and conscious about keeping the organization’s money dedicated to research, Roxanne and her small but mighty team of 12 Fragile X runners got permission to use the FRAXA logo and created their own shirts to help raise awareness. During their recent Fourth of July race Roxanne had people ask what is Fragile X. “That’s why it’s so bold on our shirts.”
Attention-grabbing bold designs are also why Roxanne loves SparkleSkirts—although her go-to skirt recommended by SparkleSister Jen Quick is JigSaw, the Autism awareness SparkleSkirt. Even though she loves when people ask about Fragile X, she was self-conscious in her athletic apparel until she discovered SparkleSkirts at a Disney race. “I used to despise photos. I mean after all I’m a grandma!” Roxanne said, admitting that once she saw the race photos with her wearing SparkeSkirts she began to run differently, more confidently.
“Everything was covered so I ran a lot more at ease,” she said. “Trying them on makes all the difference—you have to find what fits and feels good. Now I couldn’t live without my pockets and zippers!” She said she loves the bright, vibrant colors because if people notice her SparkleSkirt they might read her shirt. Then they might ask a question and start a conversation about Fragile X. After all, you just never know who you will meet—someone impacted by Fragile X or someone willing to donate.
And donations are needed. “The Fragile X community is very close-knit, but also very small,” Roxanne explained there is no Fragile X check mark; if the child or adult doesn’t have an autism marker the syndrome often goes undiagnosed. It’s a genetic autism, which is very different than regular autism. “We run for awareness and for research funds to help these kids,” she said.
Depending on the genetic mutation, the syndrome can range from slightly delayed to severely autistic. She said some with this syndrome never leave the home whereas others can get married and live a normal life. The more they learned and shared, the more Roxanne realized awareness was desperately needed because she sometimes gets questions like “What is their life expectancy?” According to the National Fragile X Foundation, “Life expectancy is not affected in people with Fragile X Syndrome because there are usually no life-threatening health concerns associated with the condition.”
A lot of children with Fragile X have a genetic autism marker, but they need to be diagnosed. Without the diagnosis, it’s hard to get extra support like Individual Education Programs (IEP) they need.
“My grandson DJ has been blessed because his dad is military; they have advocates. He’s been in preschool since two and a half and been in Applied Behavior Analysis (ABA) Autism school. There are a lot of kids out there who aren’t,” said Roxanne. That’s why she continues to run and raise awareness, not only for her grandchildren, but others impacted by Fragile X.
“I don’t know what else to do to help. Sometimes all you can do is talk, try to educate people. So I’ll never stop talking, never stop sharing.” Now SparkleSkirts is joining Roxanne and FRAXA's efforts to raise awareness with the FRAXA embellishment, $5 of each embellishment purchased will benefit the organization.