Scientist Who Found Huntington's Gene Now Fights Own Diagnosis

After watching Huntington's disease take her mother and uncles, Nancy Wexler dedicated her life to finding answers. In 2020, she revealed she was living with the same devastating genetic condition she'd spent decades studying.

Wexler's journey began in 1968 when her family created the Huntington's Disease Foundation. She was still healthy then, but the 50-50 chance she'd inherited the faulty gene hung over her future.

She threw herself into research, traveling to Venezuela to study families affected by the disease. The small, informal workshops her foundation organized brought scientists together in ways that were revolutionary at the time. Researchers talked across disciplines, shared ideas freely, and collaborated instead of competing.

In 1993, after 25 years of work, the scientists her foundation supported finally identified the huntingtin gene. Wexler hoped treatments would follow quickly, but the brain proved far more complex than anyone imagined.

Throughout this time, Wexler chose not to get tested for the gene herself. Without effective treatments available, she felt she could live better with uncertainty than with the knowledge she'd definitely develop the disease. She focused on her work as a neuropsychology professor at Columbia University and continued pushing research forward.

Eventually, she began noticing the telltale movements in video interviews. Denial kept her going for a while, she admits in her new memoir "My Life, My Science: Pursuing a Cure for Huntington's Disease." But acceptance came, and with it, a new chapter in her mission.

Why This Inspires

Even while living with Huntington's and facing increasing difficulty with daily activities, Wexler still serves as president of her foundation. She attends board meetings virtually and stays current on the latest research breakthroughs.

Her foundation pioneered approaches now used across genetic disease research. The emphasis on collaboration, the practice of having patients share their experiences with scientists, and the focus on genetic counseling all became models for other conditions.

Working with her sister Alice to write her memoir, Wexler wanted future generations of families and scientists to learn from her journey. Her life proves that even when hope gets tested, it doesn't have to break.

Now in her late 70s and mentally alert despite her diagnosis, Wexler continues the fight she started more than 50 years ago.