Decades of dedication lead to drug trial for rare, fatal illness

John P. Atkinson, MD, (right) talks with patient Kim Morey, of Bentonville, Ark., a participant in the first clinical trial evaluating a potential drug therapy for a rare, fatal disease called retinal vasculopathy with cerebral leukodystrophy (RVCL). Atkinson, who directs the RVCL Research Center at Washington University School of Medicine in St. Louis, is leading the trial and has played a key role in research to describe the disease and develop a genetic test to identify it.
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When Kim Morey was a young girl, a mysterious illness affected her family, striking relatives one by one at around the age of 40, she recalled.

“My dad’s grandmother had it, and then his mother and her sisters,” Morey said. “Then my dad’s cousin. And soon after that, my dad started showing symptoms.”