--- title: Nancy Wexler Looks Back on a Life Spent Unraveling the Mystery of Huntington’s Disease description: In a new memoir, Nancy Wexler, who championed research efforts into learning more about Huntington’s disease, reflects on the disease that shaped her life—professionally and personally. canonical: https://time.com/article/2026/04/17/huntingtons-disease-pioneer-nancy-wexler-memoir/ author: Alice Park article:opinion: false article:content_tier: free article:published_time: 2026-04-20T20:05:23.933Z article:modified_time: 2026-05-13T06:52:11.723Z article:section: Health og:title: Nancy Wexler Looks Back on a Life Spent Unraveling the Mystery of Huntington’s Disease og:description: The renowned scientist reflects on the disease that shaped her life—professionally and personally. og:url: https://time.com/article/2026/04/17/huntingtons-disease-pioneer-nancy-wexler-memoir/ og:site_name: TIME og:image: https://static.time.com/v3/assets/bltea6093859af6183b/bltfa281ae5194f8306/69deb28ef102016fdf3e12c0/nancy-wexler.jpg?branch=production&width=2400&quality=75&auto=webp&crop=16:9 og:image:width: 1200 og:image:height: 675 og:image:alt: nancy-wexler.jpg og:type: article twitter:card: summary_large_image twitter:title: Nancy Wexler Looks Back on a Life Spent Unraveling the Mystery of Huntington’s Disease twitter:description: The renowned scientist reflects on the disease that shaped her life—professionally and personally. twitter:image: https://static.time.com/v3/assets/bltea6093859af6183b/bltfa281ae5194f8306/69deb28ef102016fdf3e12c0/nancy-wexler.jpg?branch=production&width=2400&quality=75&auto=webp&crop=16:9 ---  # Nancy Wexler Looks Back on a Life Spent Unraveling the Mystery of Huntington’s Disease  by [Alice Park](https://time.com/author/alice-park/)  ## Alice Park Senior Correspondent Apr 20, 2026 8:05 PM UTC  At Columbia Presbyterian Hospital, Wexler unrolls a genetic chart of families she has researched for genetic tracking. At Columbia Presbyterian Hospital, Wexler unrolls a genetic chart of families she has researched for genetic tracking.Photo by Acey Harper—Getty Images  by [Alice Park](https://time.com/author/alice-park/)  ## Alice Park Senior Correspondent Apr 20, 2026 8:05 PM UTC Nancy Wexler is famous among scientists for her singular dedication to [understanding](https://time.com/collections/time100-health-2026/7362529/sarah-tabrizi/) [Huntington’s disease](https://time.com/7320997/huntingtons-disease-treatment-gene-therapy/), which affected her mother, her uncles, and now her. The Hereditary Disease Foundation (now called the Huntington's Disease Foundation, or HDF) that she and her family created in 1968 pioneered many of the ways that scientists study and manage [genetic diseases](https://time.com/article/2026/04/14/ai-disease-genetic-mayo-clinic-goodfire/), and Wexler was early to explore the ethical challenges surrounding [genetic testing](https://time.com/5783784/dna-testing-genetics/) and the importance of counseling for families affected by hereditary conditions. Her passion for understanding the disease led her to contribute to groundbreaking genetic studies of families in Venezuela with Huntington’s. In 1993, 25 years after her family launched their foundation, the group of scientists they supported finally identified the Huntington’s gene, called, huntingtin, or HTT. Years later, Wexler began noticing the [motor symptoms](https://time.com/7331052/migraine-symptoms-without-headache/#:~:text=against%20your%20skin.-,Motor%20changes,-Hemiplegic%20migraines%E2%80%94which) of the disease in herself, though it took time for her to accept that she was likely affected. "When I saw myself in video interviews, I noticed the movements. I could tell what was happening," she writes in her new memoir, _My Life, My Science: Pursuing a Cure for Huntington's Disease_. "But for a long time, I didn't accept it. Denial was my mode of operation, carrying on the family tradition." In 2020, she revealed she was living with Huntington’s but was still working and mentally alert, although she increasingly had difficulty communicating and conducting daily activities. She serves as president of HDF and continues to virtually attend the foundation's board meetings while staying on top of the latest research in the field. Wexler is a professor of neuropsychology at Columbia University. She worked closely with her sister Alice Wexler to write the memoir, to chronicle her personal and professional experiences with Huntington’s disease so future generations of families affected by the disease, as well as scientists, can learn from her family's journey. With Alice's help by email, she answered questions from TIME about her life's work. _This interview has been condensed and edited for clarity._ ### How did HDF become a model for researching and understanding other hereditary diseases? The small, informal, interdisciplinary workshops started by my father around 1971 were quite popular from the outset, with attendees saying they were so different from most scientific meetings at the time, where researchers typically presented prepared talks with slides and with little time for discussion. People appreciated the smaller, more informal settings where the emphasis was on discussion and conversation, often across disciplines. Then we had small seed money grants, used to help young scientists with bridge funding en route to applying for funds from the NIH. We brought many new investigators into HD \[Huntington's disease\] research in that way. And we started a tradition of beginning the workshops with a so-called patient presentation, where someone living with HD, usually accompanied by a family member or two, would talk to the group about their experience living with the disease and be interviewed by a clinician at the meeting. Researchers in HD became known for being collaborative and cooperative, and that too may have inspired other disease research communities. ## After the gene was identified in 1993, did you think treatments and advances for patients would follow quickly? Yes, I did think so. I was disappointed that the cure or a treatment wasn’t around the corner, as happened for example with [hypercholesterolemia](https://time.com/7009321/high-cholesterol-genetic-familial-hypercholesterolemia-what-to-do/), where identification of the fundamental defect led to treatment with [statins](https://time.com/6248034/how-to-control-high-cholesterol/). But I soon came to appreciate how difficult the problems of the brain are, and how complex the challenges. Just to figure out the structure and function of the normal and abnormal huntingtin protein was hard. ## Why did you decide not to get tested? Once we started the genetic marker study, I assumed I would get tested once we identified a marker. But when we did find a marker, in 1983, I began to recognize all the limitations of a predictive test for a disease that had no effective treatment, much less a cure. In addition, the marker was not 100% accurate, since it was a test for linkage, not for the genetic mutation itself. One of my main reasons for considering testing myself was to avoid the risk of passing on the disease. But soon the possibility of non-disclosing preimplantation genetic diagnosis (PGD) meant that one could get pregnant without having to learn one’s own genetic status, yet be assured that the faulty gene would not get transmitted to the next generation. Ultimately, I felt I could live better with the ambiguity of not knowing than with the certainty of developing the disease if I happened to receive a positive gene result. Professionally, I felt that getting tested would increase the scrutiny I was already under, and I wanted to avoid that. I was aware that some of my colleagues—especially neurologists!—looked at me almost as if I were a patient, trying to ascertain whether I was manifesting any signs of chorea. That made me uncomfortable and even angry. Journalists too sometimes asked me if I had gotten tested, which I felt was very inappropriate and even invasive. Testing is a private decision. It was none of their business. **Read More**: [_Heart Disease Is Preventable. So Why Does It Kill So Many of Us?_](https://time.com/article/2026/04/13/heart-disease-is-preventable-sadiya-khan-essay/) ## You published one of the early papers on understanding the impact of genetic testing for hereditary diseases and the importance of genetic counseling. Did your thinking on this topic and how to support patients and families evolve over time as genetic approaches became more widespread—and through your own experience living as an individual at risk? Yes, it did evolve. I became more convinced that, in a great many cases, the risks of pre-symptomatic testing outweighed the benefits, since there was no way to prevent or delay the disease in any case. And no effective treatment was yet available. Ultimately, relatively few people at risk have chosen to get tested. I used to say to people, "What would you do differently if you knew you were going to get HD?" And when they told me, I would say to them, "Why don’t you do those things anyway!" And sometimes they did! The current situation presents a somewhat different situation than \[my sister Alice and I\] faced even 5 years ago. There are now clinical trials that need enrollees whose genetic status is known. Our challenge today and for the foreseeable future is how to avoid pressuring people at risk to get tested, while enabling promising clinical trials to recruit sufficient numbers of enrollees and ensuring their support through access to affordable counseling before, during, and after the testing process. ## In your memoir, you address the stigma felt by patients and families living with HD. Do you think the stigma has lessened over time? There is definitely still a stigma surrounding Huntington’s, as with any disease or disability involving cognitive or psychiatric symptoms, and especially one that is hereditary. But at least more people, especially clinicians, recognize that these symptoms are a specific disease, Huntington’s—not a moral failure or bad character or some other disorder such as alcoholism or schizophrenia, diagnoses that used to be given to people with Huntington’s. And certainly there are many more knowledgeable clinicians to help and many more resources for those facing HD. And also laws aiming to protect people from discrimination, such as the Americans With Disabilities Act and the Genetic Information Nondiscrimination Act. However, the economic and social burden has not lessened. In fact it has increased, due to devastating cuts in Medicaid and other social services under the current Administration. And the equally devastating cuts to scientific research further impedes the lives of those hoping that cutting-edge research and new clinical trials will soon lead to an effective treatment. ## What in your view is the most misunderstood fact or aspect of Huntington’s that you’d like the public to know and become more educated about? I’d like them to know that just because our minds may operate more slowly than before, and our ability to speak has become compromised so that it is difficult for us to make ourselves understood, we are still aware and can understand everything you say. I’d like them to know that while we may look as if we’ve been drinking or on drugs as we walk unsteadily down the street, we actually have a disease that makes our walking and talking difficult. ## In your career, you stood out as a woman in heavily male-dominated fields of science. What lessons would you like to leave young women today about not just surviving but thriving and overcoming gender biases in STEM fields? Just don’t be put off. Don’t get discouraged or dissuaded when you encounter gender bias. Just keep on going. ## Last year, researchers reported exciting results with a [gene therapy](https://time.com/7320997/huntingtons-disease-treatment-gene-therapy/) that is the first to slow progression of the disease—by 75%. What do these results mean to you? If those results from the Uniqure trial hold up, they are incredibly significant because they are the first demonstration in humans that it is possible to slow progression of the disease. So I am hopeful that Uniqure and the FDA can find a way through their [current disagreements](https://www.reuters.com/business/healthcare-pharmaceuticals/fda-tells-uniqure-study-data-insufficient-brain-disorder-therapy-application-2026-03-02/) to answer the FDA’s objections, validate the impressive evidence of slowing progression, and make the drug available, at a reasonable cost to patients, including the Venezuelan HD families who contributed so much to making this result possible. ## At the same time that we’re seeing breakthroughs in understanding so many diseases, we’re also seeing drastic cuts in research funding—especially at the NIH, where you spent so much of your career. How concerned are you by this trend, and how might it impact research for conditions like Huntington’s? I'm very concerned about these budget cuts, which will have devastating long-term impacts on U.S. biomedical science. Not only will they reduce the number of research projects carried forward, they will also lessen the number of talented young researchers who might enter the Huntington’s field, or neuroscience and genetics more broadly, perhaps leading to a [brain drain of scientists leaving the United States altogether](https://time.com/7379376/scientist-migration-us-to-europe/). ## You could see the Huntington’s Disease Foundation as developing in stages. In its first stage, you and your family focused on identifying the gene responsible for the disease. What is your vision for the next evolution of the foundation, and what do you hope it will accomplish in its next 50 or 60 years? Actually, the foundation did not start out looking for the gene. The first focus was on studying metabolic and biochemical changes in Huntington’s, testing out existing drugs that might have an impact, gathering basic data, and identifying families who had remained hidden from any kind of research or advocacy network. There were some early linkage studies we supported that looked for a marker of some kind—a blood type, for instance. But we only started looking for a genetic marker in 1981, 13 years after our father organized the predecessor to the Huntington’s Disease Foundation. I hope the foundation will continue to seek out and support young researchers through workshops, small grants, investigator awards, and larger biannual meetings, and to keep bringing new people into the Huntington’s research field. I hope it will find treatments to make it possible to live well with Huntington’s and eventually to cure or prevent it altogether. 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