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The woman who has led efforts to raise awareness and money in this part of South Carolina for the National Kleine-Levin Syndrome Foundation now has an official role among the foundation's brain trust.
Lancaster County resident Donna White is now part of the KLS Foundation's new advisory board, which will have up to four members at first and more later. They will represent all parts of the world where KLS - a rare neurological disorder that causes people to sleep up to 20 hours a day and is without any known cause or cure - is found.
"I was very shocked and honored," White said of her appointment to the national advisory board. "It is an opportunity to continue work in South Carolina as a chapter."
White said the role gives her greater ability to talk to professionals, such as doctors. It might get her more attention from doctors.
"It gives me an edge to take awareness to another level," White said.
White's son, Ryan McKinney, was suffering from KLS when he died from a heart attack in early 2006 at a Columbia hospital. She said her son was diagnosed with KLS only after a series of misdiagnoses and mistreatments, perhaps leading to his final fate.
Cindy Maier, founder and current board member of the national foundation, said the advisory board was created to give the executive board, which consists of medical and business professionals with personal or familial experiences with the disorder, another set of ideas for fundraising and programming.
Ideally, the board will grow to include a representative from each state and from each country where KLS is reported.
"It will be international in scope because KLS is an international disorder," Maier said. "Hopefully, we'll get ideas from all over the world."
The advisory board will be able to participate in the executive board's monthly meetings through Web conferencing, Maier said.
Maier said the official role White and another fundraiser, Christine Penny, have been given allows them to have greater input and also shows how appreciated the national foundation is.
"This is also to acknowledge the work Donna and Christine have already done," Maier said.
Next fundraiser here
The next Ryan McKinney Memorial Walk is slated for March 29 at Lancaster High School.
An event this year raised nearly $10,000 for the national foundation.
Gov. Mark Sanford will serve as the honorary chairman for this year's event, White said.
"That is indeed an honor," White said. "We are very thankful."
NFL stars Sheldon Brown and Darrell Shropshire and Olympic gold medalist Shawn Crawford are expected to attend for a second year. This year's event will also include a barbecue dinner made by Dr. William Duke and a silent auction.
Volunteers will start fundraising in early 2008, focusing on local businesses and schools.
The Ryan McKinney Memorial Fund is open for donations at any Founders Federal Credit Union branch.
Contact Johnathan Ryan at 416-8416 or firstname.lastname@example.org