stories from volunteers

picture of paul covingtonName:Clenton G. Winford, II, PhD
Home State: Texas

Clenton Winford has been participating in medical research since 1988.

Why? Clenton participates in medical research to help doctors understand more about von Hippel-Lindau (VHL) syndrome, a rare genetic disorder that affects his family. “Here at the Clinical Center we’re all kind of learning things together,” says Clenton. “There is this sense of community and solidarity. You’ve got this confluence of people — both patients and health workers — looking for answers that we as a society have never known.”

Clenton's story
: Clenton was 25 years old when he first came to the NIH Clinical Center, the nation's research hospital in Bethesda, Maryland. It was 1988, and doctors there had just begun to study families diagnosed with von Hippel-Lindau syndrome, known as VHL. In VHL, small blood vessels, or capillaries, knot together to form benign growths called angiomas - although as Clenton can tell you, "benign" doesn't necessarily mean "harmless." The disorder causes retinal tumors, which in Clenton's case had resulted in blindness.

Clenton, whose father was diagnosed the year Clenton was born, volunteered for an observational study. Doctors would learn what they could by monitoring the progress of the disease in patients such as Clenton.

"I was dreadfully ill and had no idea what I should do," Clenton recalls. "I came here purely for research and was diagnosed, but then was offered treatment." As a volunteer patient in a series of research studies, he has had surgical removal of tumors and cysts from his brain, spinal cord, pancreas, adrenal gland, and end lymphatic sac. He has also had countless sessions of imaging scans and other tests to chart the progression of his disease.

Thousands of patients worldwide have benefited from what doctors learned studying Clenton, his family, and other families with a history of VHL. "Those of us who have been dismissed elsewhere and have been told there is nothing else to be done, find that by coming here, we have one more chance to look at our problems, maybe another roll of the dice - another turn at bat, if you will."

Clenton earned a PhD in political economy from the University of Texas at Dallas in 2003. He and his wife, a nurse midwife, opened a birthing center in Grand Prairie, Texas. They and his seeing-eye dog, Brewster, travel from Texas to Maryland several times a year for tests, treatments, and occasional surgery.

Over the years, doctors involved in his care, with the help of other patient volunteers with the disorder, have identified three different cancer genes and discovered two new diseases (Hereditary Papillary Renal Carcinoma and Familial Renal Oncocytoma), benefiting thousands of patients worldwide.

Read more stories