Nancy Wexler was 22 when she got the grim news. Arriving home in Los Angeles after studying abroad on a Fulbright scholarship, she learned that her mother, then 53, had been found to have Huntington's disease. Wexler was devastated. The genetic disorder, which afflicts 30,000 Americans, had claimed the lives of her three uncles and her maternal grandfather, and she was only too well aware of what lay ahead for her mother: mental deterioration, uncontrollable movements in all parts of the body and, after a decade or so, death.
Because her mother had Huntington's, Nancy realized that she herself had a 50% risk of carrying the defective gene. And if she had inherited that gene, her fate was sealed; she would eventually come down with the disease, which usually strikes adults between the ages of 30 and 50.
Those dismaying revelations had a profound effect on Wexler, becoming the driving force in her remarkable career and largely shaping her personal life. Today, at 46, she is best known for her work -- which involved tracing the family tree of thousands of Venezuelans -- that led to the development of a highly accurate test for the Huntington's gene. She is president of the Hereditary Disease Foundation and chairs a key advisory group of the $3 billion Human Genome Project, which is attempting to identify all of the more than 100,000 human genes and pinpoint their locations on the 46 chromosomes. As a clinical psychologist at Columbia University, she conducts research and counsels people suffering from Huntington's.
Wexler credits her father, now 83 and still a practicing psychoanalyst in Los Angeles, with motivating her on the day that he told her about her mother's illness and discussed the fact that she was at risk as well. "Practically in the same breath," she recalls, "he said, 'And we're going to fight it.' " He informed Nancy and her sister that he had started a group dedicated to curing Huntington's and had begun organizing workshops at which scientists could plan their attack on the still mysterious cause of the disease. "It was really therapeutic," Nancy says. "It gave us something to hold on to. At the time, we all thought we might find a treatment in time to save my mother. We were pretty naive."
Enrolling in graduate school at the University of Michigan at Ann Arbor, Wexler set her sights on a doctoral degree in clinical psychology, and chose Huntington's disease as her thesis subject. She also set up a Huntington's group in nearby Detroit, working with afflicted families there.
"At first, in Ann Arbor, I didn't tell anyone about being at risk," she says. "I was too stunned, but I was also embarrassed about it, ashamed." In Detroit, however, surrounded by Huntington's families, she freely discussed her risk and her emotions. "So I had this kind of schizophrenic life between my Detroit world and my Ann Arbor world," she recalls. "One was my sick world, and one was my healthy world, and I would commute."