There is a particular kind of vulnerability that comes with telling someone you have Huntington’s disease (HD). It can happen in friendship, dating, or any new relationship where you are trying to decide how much of yourself to reveal and when. For me, disclosure has never felt simple. It’s not just sharing medical information. It’s […]
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uniQure has submitted an application to the U.S. Food and Drug Administration (FDA) seeking accelerated approval of AMT-130, the Netherlands-based company’s gene therapy candidate for Huntington’s disease. A similar request for marketing authorization in the U.K. has been made to the nation’s Medicines and Healthcare products Regulatory Agency (MHRA), uniQure announced. The one-time gene therapy, […]
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I never met Dolly Parton, but like millions of others, I felt like I knew her. It’s easy to feel this way because of her music, laughter, generosity, the stories she told, and the remarkable way she seemed to make room for everyone. She was successful, wealthy, and larger than life, but she never seemed […]
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I’ve never been completely comfortable with the pressure that comes with the theme of “starting over.” We’re often encouraged to treat a new month or year, a birthday, or even a simple Monday as an opportunity to become a better version of ourselves. We make resolutions, buy planners, create routines, and promise ourselves that this […]
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A real-world study shows that the approved chorea treatment Austedo (deutetrabenazine) reduces involuntary movements in adults with Huntington’s disease and is generally well tolerated in clinical settings. According to the researchers, most patients experienced a decrease in the severity of their chorea — involuntary muscle movements that can be a symptom of Huntington’s — after reaching […]
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Imagine anger residing at one end of your home and autonomy at the other, with Huntington’s disease (HD) sitting right in the middle. Before my wife, Jill, found out eight years ago that she is gene-positive with HD, she could usually tell when she was becoming irritated. She could then decide how to process those […]
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When people talk about joy, they often make it sound polished. It might be presented as big smiles, perfect vacations, exciting announcements, or lives that seem untouched by hardship. It’s often packaged as something bright, effortless, and easy to recognize. But that’s not the kind of joy I know. My joy exists alongside Huntington’s disease […]
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A speech index score built from smartphone voice recordings tracked the severity of Huntington’s disease and matched closely with standard clinical assessments and brain scan measurements, according to a new study from China. The index score, derived from measures of loudness variation, mispronunciation rate, pitch strength, and speech timing, allowed researchers to distinguish people carrying […]
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My wife, Jill, who is gene-positive with Huntington’s disease, and I don’t usually associate Legos with cancer. Those are two worlds that feel like they belong on completely different shelves in life. Yet American households collectively owe at least $220 billion in medical debt, much of it tied to treatable conditions. Since Huntington’s entered our […]
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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 […]
The post How I feel safe in my own body again while living with HD appeared first on Huntington's Disease News.
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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