For a long time, my body didn’t feel like a safe place to live. Huntington’s disease changed the way I moved, rested, thought, and experienced the world. My earliest symptoms began with involuntary movements in my toes. Over time, they spread to my fingers, arms, legs, upper body, and face. My balance became unpredictable, and […]
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Soma and Neurite Density Imaging (SANDI), an imaging technique that uses MRI scans to capture microstructural features of the brain, may be a useful tool for tracking the progression of Huntington’s disease, a study suggests. Huntington’s patients’ SANDI data, together with age, could explain up to 63% of shrinkage (atrophy) in the striatum, a brain […]
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My wife, Jill, was watching a show about survival the other night, the kind where people are pushed to their limits in the wilderness. When it ended, she turned it off and sat quietly for a moment. Then she said, almost to herself, “It’s wild how far people will go just to stay alive, even […]
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Attending the 2026 Huntington’s Disease Society of America (HDSA) Convention in late June in Phoenix, Arizona, gave me the opportunity to meet professionals working to improve care for people affected by Huntington’s disease (HD). One of those professionals was Elizabeth Ferluga, MD, director of movement disorders at the telehealth care platform Synapticure. Whenever I meet […]
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Motion data collected by a smartwatch may offer a more objective way to monitor worsening involuntary movements in people with Huntington’s disease than clinic visits alone, a study found. Researchers in the U.K. and Switzerland developed a digital tool to estimate the severity and progression of chorea, a hallmark Huntington’s symptom characterized by involuntary, jerky […]
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Disability benefits is one of those topics that my wife, Jill, and I never thought much about until Huntington’s disease forced it into the center of our lives. Before Jill was diagnosed as gene-positive in 2018, I vaguely pictured disability as something that happened to other people, a label that meant you were confined to […]
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My journey with invisible muscle movements known as chorea began in 2010, before I knew that Huntington’s disease was part of my story. It started with subtle, writhing movements in my toes. At first, the movements seemed small and easy to dismiss. I didn’t understand why they were happening, or what they would eventually mean […]
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A novel gene-editing approach that’s designed to alter the huntingtin protein so it’s less prone to forming the toxic clumps that drive Huntington’s disease led to better motor function and less brain damage in a mouse model of the disease, a study shows. “Our results suggest a new way of thinking about treating Huntington’s disease: […]
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Years ago, our daughter, Alexus, asked where her favorite “coat to steal” was. She described one of my jackets. I pictured my closet and came up blank. “I don’t know what you’re talking about,” I said. She described it in detail: the color, the fabric, and how it hung on her. I denied ever owning […]
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Sleep is supposed to restore the body and mind, but living with Huntington’s disease (HD) can make getting a peaceful night of rest more complicated. HD doesn’t stop affecting me simply because I get into bed. Involuntary movements, restlessness, anxiety, racing thoughts, medication effects, and changes within the brain can all interfere with my ability […]
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A team led by scientists at a U.K. research organization has created a questionnaire to measure quality of life among people with manifest Huntington’s disease, meaning those who are experiencing the hallmark motor symptoms that characterize the genetic disorder. Dubbed the Huntington’s Disease Manifest Quality of Life measure (HD-mQoL), the questionnaire — whose development was […]
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During a recent car ride, my wife, Jill, and I were listening to a podcast about healthcare, a topic I’ve become more familiar with in recent years. One comment surprised me: Many of the approximately 6o million Americans who live in rural areas don’t have access to basic healthcare due to a lack of nearby […]
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Planning for the future while living with Huntington’s disease (HD) requires me to hold two truths at the same time. I understand that HD is progressive, and that my needs may change. I also believe that my future can still contain purpose, joy, growth, relationships, and meaningful work. Hope and acceptance are not opposites. Acceptance […]
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A global clinical trial testing SKY-0515, Skyhawk Therapeutics’ daily oral therapy for Huntington’s disease, will soon start recruiting adults with the genetic condition in the U.S., Canada, and the U.K. Regulatory authorities in all three countries have granted permission to open sites for the worldwide portion (004-WW, NCT07378644) of the pivotal FALCON-HD study, which began […]
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On a recent evening, my wife, Jill, who is gene-positive with Huntington’s disease, sat me down and said, “I need you to understand what happens in my head when I keep asking the same question.” When perseveration hits, it feels to her like a record needle that keeps jumping back to the same line. She […]
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Fatigue is one of those symptoms of Huntington’s disease (HD) that people may not see or fully understand. When someone looks at me, they may assume that because I am walking, talking, writing, traveling, or speaking publicly, I must feel fine. What they do not see is the amount of energy it takes me to […]
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An early-stage clinical trial designed to test a novel stem cell therapy — one designed to replace lost or damaged nerve cells in the brain — in people with Huntington’s disease is now recruiting adults with the genetic condition at its single site in California. The Phase 1/2 trial, dubbed REGEN4HD (NCT07451613), is mainly evaluating the […]
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My wife, Jill, and I recently went to Target to shop for new baskets. The trip reminded us of when we helped our daughter move earlier this year, and how that trip helped us to see each other more clearly, which sits at the heart of how we live with Huntington’s disease (HD). Jill, who […]
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When I first heard about the devastating earthquakes that happened in Venezuela on June 24, my heart immediately went out to the families trying to survive the aftermath. I thought about the fear, the confusion, the loss, and the uncertainty that come after such an unimaginable disaster. I also thought about the families living with […]
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An oral compound now being tested as a potential treatment for several neurodegenerative conditions was shown, in multiple laboratory models, to reduce the toxic protein clumps in nerve cells that drive Huntington’s disease. These findings suggest that the compound, called Anle138b, may also be a possible therapeutic option for people with this rare genetic disorder, […]
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The recent news that UniQure plans to ask the U.S Food and Drug Administration for accelerated approval of the experimental gene therapy AMT-130 to treat Huntington’s disease (HD) in the next few months caused my wife, Jill, to admit something that startled me. Jill, who is gene-positive with HD, said that sometimes she thinks a […]
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Living with Huntington’s disease (HD) can sometimes feel like carrying a weight that other people cannot see or fully understand. HD affects movement, thinking, emotions, communication, and independence. The symptoms can change from one day to the next, which makes it difficult to predict what kind of support a person may need. Although I have […]
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Latus Bio plans to submit an application with the U.S. Food and Drug Administration (FDA) to move LTS-201, a one-time gene therapy for Huntington’s disease, into clinical trials. The application, which the company expects to file in the current quarter, leverages promising results in Huntington’s animal models showing the treatment reached brain regions affected by […]
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Understanding underlying disease processes, reframing challenges, and using self-care techniques can help a person caring for someone who has Huntington’s disease build a sustainable caregiving practice, according to social worker Amy Lemke, PhD. Caring for a Huntington’s patient is like captaining a boat through a storm, Lemke, clinic coordinator at the University of Iowa’s HDSA […]
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Several late-stage clinical trials are now recruiting participants to test whether three experimental oral therapies can slow the progression of Huntington’s disease, with active or planned sites in the U.S. Representatives from three pharmaceutical companies described the development status of those therapies in a clinical trial showcase at the 41st Huntington’s Disease Society of America […]
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