Some experiences stay with you long after you return home, and my recent trip to New Orleans for advocacy work was one of them. I arrived expecting to share my story, learn more about Huntington’s disease (HD), and connect with members of the HD community. What I experienced was something much deeper. The Huntington’s Disease […]
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Time-restricted eating (TRE), a form of intermittent fasting that limits daily calorie intake to a six-to-eight-hour window, may help slow the progression of Huntington’s disease, according to results from a three-month pilot study. Study participants were able to maintain their body weight while showing reductions in disease severity measures and a nerve damage biomarker, along […]
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Years ago, my wife, Jill, was at a party talking with a friend. The conversation turned personal, and her friend asked a difficult question. It was the kind of question people sometimes ask when they want to be reassured but are afraid to hear what someone who knows them well might really think. Jill paused […]
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Living with Huntington’s disease (HD) has taught me a great deal about healthcare, both the kind that makes you feel supported and the kind that leaves you questioning whether you were truly heard. As a Black woman living with HD, I have learned that being believed is not always guaranteed. I wish more healthcare workers […]
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In final 15-month study data, people with early-stage Huntington’s disease treated with SKY-0515, Skyhawk Therapeutics’ investigational oral therapy, showed improvements in function, movement, and cognition. That’s according to final results from Skyhawk’s Phase 1/2 clinical program, which included the registered Phase 1 trial (ACTRN12624000602527). The study included about two dozen Huntington’s patients, with assessments reported […]
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My wife, Jill, who is gene-positive with Huntington’s disease (HD), has always believed that if something matters to you, you should pay attention to the people in charge of it. Lately, that has meant watching U.S. lawmakers much more closely. As someone living with a rare disease, she sees every healthcare decision through a painfully personal […]
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There are moments when looking at my mother feels like looking into a future I am trying very hard not to fear. My mother lives in a nursing home now. She is unable to walk, wears adult undergarments, and depends on others for many of her daily needs. I am one of her powers of […]
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An early and progressive loss of a protein that helps maintain myelin, or the protective sheath around nerve fibers, may contribute to white matter damage in Huntington’s disease, a study suggests. In a mouse model of Huntington’s, levels of the myelin-associated glycoprotein (MAG) began falling before the loss of other myelin-related proteins and before broader […]
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For families affected by Huntington’s disease, some courtroom trials — especially those involving a defendant’s deteriorating mental health — are impossible to watch without feeling the weight of the tragedy at their center. The recent Lindsay Clancy trial is one example. Clancy was a nurse from Massachusetts whose lawyers don’t deny that she killed her […]
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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 […]
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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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