Local group plans to keep raising funds, awareness of rare disorder

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By Johnathan Ryan

After a successful initial fundraiser earlier this year, the local residents working to increase awareness and funds to research Kleine-Levin Syndrome are gearing up for another drive.

KLS is a mysterious and rare sleeping disorder. Those afflicted may sleep 20 hours a day. There's no known cause or therapy. It tends to first strike in the preteen years, more often in boys than in girls, and tends to go away in the late 20s. The disorder is poorly understood and often misdiagnosed.

The local board, which has evolved into the state chapter, met Nov. 13 at Pleasant Ridge Presbyterian Church. The board decided to hold its 2008 fundraiser on March 29 at the Lancaster High School track.

There will be a walk around the track, a barbecue luncheon and an NFL memorabilia auction at the event.

Athletes from this region – NFL stars Sheldon Brown and Darrell Shropshire and Olympic gold medalist Shawn Crawford – will appear at the event, as will KLS survivor Dani Farber. They all appeared at this year's fundraiser in Lancaster.

"We hope to do as well and better this year," said chief organizer Donna White, whose son, Ryan McKinney, suffered from KLS until he died in early 2006 of a heart attack.

White believes the misdiagnoses on her son and subsequent needless medications he was prescribed led to his heart attack. That's why she's devoting time and energy to raise awareness and money to research the disorder.

"I couldn't believe it, but out of 50 doctors at the American Pediatric Conference, only two had heard of KLS," White said.

Last year's local fundraiser raised nearly $10,000 for the National KLS Foundation, which is based at Stanford University in Palo Alto, Calif. The foundation has a three-fold purpose: Disseminating information about KLS to patients and health-care providers, supporting the families and loved ones of patients and boosting research efforts.

Stanford University recently received a research grant to study a possible genetic cause of KLS from the National Institute of Health. The five-year grant will support research at labs in the Stanford area, as well as collaborative labs.

Dr. Neal Farber, KLS Foundation chairman and a molecular biologist, believes the research will lead to greater insight into the genetic component of KLS. The disorder has appeared in one or more members of an immediate family, and among ethnic groups, affects Jewish people more often than others. Two of Neal Farber's children (including Dani Farber) had the disorder, though they have been KLS free for some time.

The Stanford study will collect blood samples from 200 individual without KLS and 200 with KLS for comparative studies.

Neal Farber said fundraising events, such as the one planned here next year, should be called "fun-raising" and "friend-raising." In 2008, the national foundation will focus on developing statewide chapters, such as the one White helped organize in South Carolina.

"Donna has done a great job there in Lancaster County," he said. "We are very appreciative for the community support."

White said being part of the foundation is one of the biggest accomplishments of her life.

Contact Johnathan Ryan

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