In 1968, Nancy Wexler’s life was forever altered when her 53-year-old mother was diagnosed with Huntington’s Disease, a genetic disorder that causes the progressive breakdown of nerve cells in the brain. Almost immediately, Wexler’s father announced that he was launching a foundation to find treatments and cures – this later became the Hereditary Disease Foundation.
Wexler, who was then 23 and pursuing a Ph.D. in clinical psychology, would go on to become a pioneer in Huntington’s research, eventually succeeding her father as president of the Hereditary Disease Foundation, a position she holds today.
Wexler’s dedication to solving the mysteries of Huntington’s was inspired not only by her personal connection to the disease, but also by her parents’ passion for science and research. Her mother, who died in 1978, had a master’s degree in biology, and her father was a clinical psychologist. Her father, in particular, believed that art and science were closely linked and that creativity could emerge from bringing people together. According to Wexler, her father took what he learned from group therapy, creativity and “off-the-wall thinking,” and, through the Hereditary Disease Foundation, developed interdisciplinary workshops to generate new ideas.
In the 1970s, Wexler and other scientists gathered at these workshops to discuss the possibility of finding DNA markers for the Huntington’s gene. Most surmised that a discovery of this magnitude would take 50-100 years. But in 1979, Wexler launched a research study in an area of Venezuela where Huntington’s Disease is prevalent, and, in 1983, she was part of the group that discovered the marker for Huntington’s on the short arm of the fourth chromosome. This discovery was not only a breakthrough for Huntington’s, it also helped galvanize support for the Human Genome Project.
Wexler then pulled together a team of “gene hunters” – an unprecedented collaborative model – and, in 1993, identified the specific gene for Huntington’s Disease. The gene was found to contain codon C-A-G in varying numbers, and the team discovered that an abnormal number of CAG repeats was linked to Huntington’s. This led to the development of a pre-symptomatic test for the disease, and also has assisted in mapping other neurodegenerative diseases like Alzheimer’s.
For nearly a half century, Nancy Wexler has challenged herself, challenged conventional thinking, and collaborated far and wide to bring hope to families with Huntington’s Disease. Today her passion and commitment are as strong as ever. In addition to serving as president of the Hereditary Disease Foundation, she continues to be involved in genetic research, public policy, individual counseling and federal health administration. She also is a professor of neuropsychology at Columbia University in New York.