Memoir from a Huntington’s Disease Advocate

During my second visit with Nancy Wexler at her Manhattan home, she surprised me with a gift. It was a copy of her just-released memoir, “My Life, My Science: Pursuing a Cure for Huntington’s Disease.”

The book was signed with a stamp of her signature; she can no longer write it herself. Rising from her brown faux-leather recliner to greet me wasn’t possible either—she is unable to get up without assistance. Speaking takes significant effort for her. She can only manage a few slurred words or, with much difficulty, a short sentence.

On that bright, partly windy afternoon, Nancy and her sister, Alice Wexler, sat in recliners, facing windows that showcased a breathtaking view of the Hudson River below. Alice, who lives in California, visits Nancy every other month.

At 80 years old, Nancy Wexler battles Huntington’s disease, a relentless brain disorder that impairs movement control. Currently, there are no treatments or cures.

The disease is genetic; Nancy has lost her grandfather, three uncles, and her mother to it. Alice, however, is not affected: if one parent has Huntington’s, each child has a 50 percent chance of inheriting it. Their mother struggled with suicidal thoughts, a fate that others with the disease have tragically faced, before ultimately passing away from it.

Nancy isn’t just another Huntington’s patient. For several decades, she spearheaded research efforts in a remote area of Venezuela that led to the discovery of the gene responsible for Huntington’s. This research resulted in a blood test that allows individuals at risk of developing the disease to learn about their fate. In recognition of her contributions, Nancy has received multiple awards, including the Lasker award, one of the highest honors in science. She dedicated her life to understanding the implications of living at risk for Huntington’s disease and what it truly means to live with it.

What she didn’t anticipate, however, was that she would become a patient herself. After leading critical research that provided information to those at risk, Nancy opted not to undergo testing.

Now that the disease has progressed to a point where she can no longer actively contribute to the fight against Huntington’s, one can’t help but wonder: How might her life and research have unfolded differently had she chosen to be tested? If your future is predetermined, is knowing a blessing or a curse?