An Ironman for Down syndrome

On Aug. 29, 2010, Christian Maniscalco swam the equivalent of 43 football fields, biked the distance from Birmingham to Atlanta and ran the same length as Interstate 459 to raise money for the UAB Adult Down Syndrome Clinic. It's all part of Christian's first attempt at competing in the Ironman triathlon.It's long been a goal of Christian's to compete in an Ironman, which consists of a 2.4-mile swim, a 112-mile bike race and a 26-mile marathon. He's run some shorter triathlons and signed up last year for the August Ironman event in Louisville, Ky. From there, he learned about the Janus Charity Challenge, an online charitable fundraising system run by Janus, an international investment firm. The challenge urges competitors to pick a worthy cause to support, and provides fundraising assistance.

Christian knew a little about Down syndrome. His wife Amber works with special needs kids for the Vestavia Hills schools, and they've been attending the Buddy Walk, an event hosted by a local Down support group, Parent Advocates Down Syndrome (PADS). That led to meeting Edward Lose, M.D., the director of the UAB Adult Down clinic. Even though there is no one with Down syndrome in his family, Christian knew he'd found the cause he wanted to support as he trained and competed in the Ironman.

"Training for an Ironman is tough, but my admiration is directed to the parents of children with Down syndrome," he said. "They are iron parents, running the lifetime race of raising a child with special needs."

The clinic, which began seeing patients in July 2007, is one of the few in the nation dedicated to providing services to adult patients with Down syndrome. Because of improvements in diagnosis, treatment and management of the condition while young, Down syndrome patients now are routinely living well into adulthood and have many of the same risks for adult diseases as the rest of the population.

And those children now often reaching adulthood are bringing a new mix of healthcare issues to the fore.

"Children's hospitals, pediatricians and our medical system have done such a wonderful job in caring for children with Down syndrome that many are now living into their 40s, 50s or older," said Lose, an assistant professor in the UAB Department of Genetics. "Our clinic provides services related to their Down syndrome, but also make recommendations for general adult conditions they may be facing - from a serious illness to a bout with a common cold."

Adult Down patients often have issues with sleep apnea, obesity, hearing and vision loss, thyroid problems and vitamin D deficiencies. Aging seems to be accelerated.

Through the Janus Charity Challenge, Christian has already raised his goal of $32,000. He was the third highest fundraiser, so Janus tossed in another $6,000 as a prize.  He  completed the Louisville Ironman in just over 13 hours. And he hopes his efforts will continue to build awareness for children and adults with Down syndrome, and for the UAB clinic.

"I have to juggle a job, family, two kids and training for a triathlon," Christian says. "That's nothing compared to what families with Down syndrome or other special needs must juggle, every day of their lives."

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