During my second visit to Nancy Wexler’s Manhattan apartment, she presented me with a copy of her newly released memoir, My Life, My Science: Pursuing a Cure for Huntington’s Disease. The book bore her signature stamped on the cover—she can no longer sign herself.
Nancy remains seated in a brown faux‑leather recliner, unable to rise without assistance. Speaking demands considerable effort; she can manage only a few slurred words or, with great difficulty, a short sentence.
That bright, windy afternoon, Nancy and her sister Alice sat side by side in recliners, their backs to windows that framed a stunning view of the Hudson River below. Alice lives in California but travels to see Nancy every other month.
At 80, Nancy Wexler lives with Huntington’s disease, a progressive neurodegenerative disorder that erodes motor control. There is currently no treatment or cure.
The condition is hereditary: Nancy’s grandfather, three uncles and her mother all had it. Alice, however, does not carry the gene; each child of an affected parent has a 50 percent chance of inheriting it. Their mother attempted suicide—a path taken by some who suffer from the disease—but ultimately died from Huntington’s.
Nancy is not merely a patient; she led a decades‑long research program in a remote region of Venezuela that identified the gene responsible for Huntington’s. That discovery enabled a blood test that allows at‑risk individuals to determine whether they will develop the disease. In recognition of her work, she has received numerous honors, including two prestigious Lasker Awards. She devoted her career to understanding both the risk of and lived experience with Huntington’s disease.
What she could not foresee was that she herself would develop the disease. After helping create the test that tells people if they carry the gene, Nancy chose not to be tested herself.
Now that the disease has advanced beyond her ability to actively contribute to research, a poignant question arises: How might her life and scientific contributions have differed had she known her own genetic status? When fate is predetermined, is it a blessing or a burden to know?