- Special Sections
- Public Notices
The need to highlight an important cause overcame Saturday’s dreary weather to make the second annual Ryan McKinney Walk a success for those doing what they can to find a cause and cure of Kleine-Levin Syndrome.
KLS is a neurological disorder that causes sufferers to sleep the upwards of 20 hours a day. Saturday was a time to raise awareness and also remember McKinney, a local KLS sufferer who died at 19 while suffering from the disorder.
Attendees walked a lap around the Lancaster High School track, led by McKinney’s mother Donna White, founder of the local KLS chapter, and Dani Farber, a KLS survivor visiting from New York City to share his story of victory over the disorder.
The line was long and full of hopeful, optimistic faces. They followed a relay lap by the LHS Track and Field team.
“This is a tribute to Ryan, but we’re glad the community is here to be a part of this process,” said Floyd White Jr., Donna White’s brother and the event’s emcee.
An auction of NFL memorabilia and items donated from businesses, and barbecue sales by Dr. Johnny Dukes and helpers raised money. Attendees socialized and visited information booths from local organizations, such as the Lancaster Fatherhood Project, Lancaster County Literacy Council and Lancaster Fire Department, to name a few. Children enjoyed storytelling and face painting, and inflatable rides like the Moonwalk and Tinko’s Playhouse.
To start the event, a proclamation from Gov. Mark Sanford deeming Saturday “KLS Day” was read. Lancaster Mayor Joe Shaw also issued a proclamation, asking for greater awareness and commending local volunteers for their work. He was also optimistic about efforts to find a cure.
“I know if we can go to the moon, we can find a cure for this,” he said.
Members of the S.C. Kleine-Levin Syndrome of Lancaster, the local group, are still counting donations from individuals, organizations and local schools for the event. Last year’s event raised $10,000. At least that, and hopefully more, will be raised this time around, Donna White said.
A year of milestones
The difficult ordeal White faced in getting her son diagnosed and the strain of hospitalization was backbreaking to her and her family. That hasn’t stopped White and her family from looking for ways to prevent what happened to McKinney from happening to other KLS sufferers.
“Donna is a very positive person. She has turned a negative into a positive,” said Rita Cauthen, a longtime friend of White. “So many people need to come together and support this.”
McKinney spent several years coming in and out of KLS sleep episodes before finally being diagnosed with the disorder, which doesn’t cause malady, just sleeping spells and active hours of confusion and fatigue.
Unlike McKinney, Farber received an early diagnosis, preventing perhaps a slew of unnecessary and perhaps damaging treatments as a result of inaccurate diagnoses.
“I was really fortunate,” Farber said, remembering getting diagnosed during his second KLS episode while living in Boston, Mass., home to one of the best medical communities in the world.
Farber, White and those involved on local and national levels in raising awareness and money for KLS research want sufferers to be diagnosed early. New KLS Foundation and local Web sites are devoted to getting information out about early diagnosis.
On the research end, the national foundation received its first federal grant from the National Health Institute to study possible genetic links to the onset of KLS. The national foundation continues to seek KLS sufferers and non-sufferers for the study and others.
The likelihood of receiving more funding in the future as a result of greater awareness is not lost on supporters. Often rare and little known ailments get much less in public and private funding than more common ones, such as diabetes, for example.
“That (receiving the grant) was one of our milestones,” Farber said.