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URMC hosts convention for rare childhood disease

Rochester, N.Y. -- Researchers and parents from around the world gathered at the University of Rochester Medical Center Saturday to discuss the future of research for a rare, eventually deadly disease that affects kids.

Juvenile Batten disease comes with little warning. It usually causes kids to begin losing their sight between ages 5 and 8, takes away cognitive and motor abilities, and eventually kills them by their late teens or early 20s. The disease only affects 1 or 2 of every 100,000 kids.

Ellen Bledsoe, from England, and Lori Sikorra, from Westlake Village, Calif., each have kids battling the disease. They shared their motherly perspective on research and treatment.

We're no longer living in fear of diseases that once upon a time were life-threatening, Bledsoe said. They're in the history books, and we want the same for Batten disease. This being done here in Rochester is part of that process.

However short their life might be, we want it to be quality, Sikorra said. We've been able to bring to the table some of those things that affect them more personally and more directly, and hopefully maybe trying to come up with some interventions and treatments to make their life as perfect and as wonderful as we can possibly make it.

 
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