Airports can bring out some of my most challenging Huntington’s disease symptoms. The noise, crowds, bright lights, rushing travelers, long security lines, changing gates, overhead announcements, and uncertainty can quickly become overwhelming. What looks like an ordinary travel day to someone else can feel like my nervous system is being pulled in every direction at […]
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Before the end of the year, Arexera Therapeutics is planning to launch a Phase 1 clinical trial testing its experimental therapy ATL-101 in people with Huntington’s disease. According to a company press release, the upcoming trial is expected to test one-time treatment with ATL-101 at various doses, with the goal of evaluating the therapy’s safety […]
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My wife, Jill, talks about the future more than she used to. It’s not a conversation about vacations and retirement plans, but a quieter, heavier one that comes with being gene-positive for Huntington’s disease. Recently, she looked at me across our kitchen table and asked, “At what point does trying to keep someone alive become […]
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Living with Huntington’s disease (HD) has changed the way I think about the future. Before it became part of my life, planning ahead meant the usual things: career goals, travel, relationships, finances, and the kind of life I wanted to build. Now, future planning carries another layer. There are practical conversations to have, important wishes […]
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Differences in brain connections for people who carry a mutation known to cause Huntington’s disease are detectable decades before the onset of motor symptoms, a study showed. The findings suggested that the ways these connections evolve over time is altered in Huntington’s mutation carriers. While the study was limited to a relatively small number of […]
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My wife, Jill, who is gene-positive with Huntington’s disease (HD), can be waiting in line at a grocery store, sitting on a park bench, or picking up a prescription, and the person next to her will start confessing something they’ve never said out loud before. They might talk about their marriages, children, jobs they hate, […]
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Living with Huntington’s disease has taught me many things, but one of the most important lessons has been learning how to stay present. When you live with a progressive illness, it’s easy for your mind to travel into a future that hasn’t happened yet. I call it “future tripping.” I can find myself wondering what […]
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Up to four years after a single dose of the experimental gene therapy ifezuntirgene inilparvovec (formerly AMT-130), people with Huntington’s disease who received the high dose showed slower disease progression than would be expected without treatment. That’s according to data from two long-term Phase 1/2 clinical trials, one in the U.S. (NCT04120493) and one in […]
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The first time I realized our kitchen had become a kind of care unit, I was standing by the sink watching my wife, Jill, pour iced tea. It was a quiet morning, the kind we used to move through without thinking. She reached for the pitcher, and her hand made a small, unintended circle in […]
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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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