Scientist With Huntington's Pens Memoir of Hope and Discovery

When Nancy Wexler was 23, she learned her mother's mysterious symptoms were Huntington's disease, the same hereditary condition that had killed her grandfather and three uncles. She also learned she had a 50-50 chance of developing it herself.

Instead of retreating in fear, Wexler became one of the world's leading genetic researchers and helped discover the gene responsible for Huntington's, a fatal neurodegenerative disorder. Now she's sharing her extraordinary journey in "My Life, My Science: Pursuing a Cure for Huntington's Disease," released nationwide in March 2026.

For 22 years, Wexler traveled to villages around Lake Maracaibo, Venezuela, home to the largest concentration of Huntington's disease in the world. Her fieldwork and collaboration with researchers made the 1993 gene discovery possible, opening doors to understanding hereditary diseases and the ethical questions surrounding genetic testing.

The memoir takes readers from government halls to university labs to impoverished stilt villages, revealing both the triumphs and costs of her quest. Wexler writes candidly about her private struggles over whether to have children and her gradual realization that she, too, was developing the disease she'd spent her life trying to cure.

Now living with Huntington's, the Columbia University professor and Huntington's Disease Foundation president offers an unflinching account of what drives scientific progress. "Science gave me a way to fight back, but it was love—for my mother, my family, and this community—that sustained me," Wexler said.

Why This Inspires

Wexler's story shows how personal tragedy can transform into purpose that changes the world. Her research didn't just advance our understanding of one disease. It helped create new models of scientific collaboration and mentored generations of researchers, especially women, in the field of genetics.

Carol Burnett calls the book "a lesson in courage, fortitude, heroism, and above all…love." Wexler collaborated on the memoir with her sister, historian Alice Wexler, and writer Mark Hampton, turning complex science into deeply human storytelling.

All author royalties support the Huntington's Disease Foundation's ongoing research and patient care efforts. Wexler's decades of work have earned her numerous honors, including the Lasker Award for Public Service and the Cold Spring Harbor Double Helix Medal.

A life shaped by urgency has become a testament to resilience and hope.