Interim clinical trial data suggest people with early-stage Huntington’s disease who were treated with the investigational oral therapy SKY-0515 for up to one year had slower disease progression than would be expected based on natural history data. That’s according to new interim data from Part C of a Phase 1/2 clinical trial (ACTRN12623001161617) that is […]
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My wife, Jill, and I recently visited the retail store Party City to pick out decorations for her mother’s 80th birthday. Jill held up a glittery banner and asked if it was too much. I joked that nothing could ever be too much for our family. Jill smiled and agreed. Even though Jill describes Party […]
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As Huntington’s Disease Awareness Month comes to a close, my heart keeps returning to one word: gratitude. Huntington’s disease (HD) is serious. It can change the way a person moves, thinks, speaks, works, relates, and dreams. It can place an enormous weight on families long before symptoms even appear. It asks caregivers to become advocates, […]
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Smartphone-recorded speech may provide a simple and less burdensome way to assess disease severity in people with Huntington’s disease, a small study suggests. Researchers found that fully automated analysis of language patterns using speech-recognition and language-analysis tools could statistically predict motor, cognitive, and functional scores with moderate to strong predictive performance. The findings suggest speech-based […]
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It was just a glimpse, really. A few seconds on the road. My wife, Jill, who is gene positive with Huntington’s disease, and I were driving home several months ago when we passed a car pulled over on the shoulder, its hazard lights blinking. A police officer stood beside a man on the grass, who […]
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Every year during Huntington’s Disease Awareness Month in May, I think about what awareness really means. It’s not just wearing blue and purple, posting a graphic on social media, or repeating facts about CAG repeats, chorea, and genetics. Those things matter, but awareness has to grow legs and turn into action. It has to become […]
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Apathy, a common symptom of Huntington’s disease, may present even before the development of hallmark motor symptoms and worsens gradually over time, according to a six-year study of people carrying a Huntington’s-causing mutation. Data also showed that in those without clear Huntington’s symptoms, apathy worsening over time was mainly driven by increasing difficulty in initiating […]
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In life with Huntington’s disease (HD), our family’s calendar fills up quickly. There are checkups, follow‑ups, and scans that land on days you would rather spend at the park or at a movie. Maybe that’s why, when a birthday shows up on the calendar, our family treats it like the best kind of breaking news. […]
The post Honoring my mother-in-law’s influence on our life with Huntington’s disease appeared first on Huntington's Disease News.
While reflecting on Huntington’s Disease Awareness Month, I am reminded that advocacy isn’t something I do only on a stage, in a column, or at an awareness event. Advocacy shows up in every part of my life, including the moments when I’m simply trying to receive basic medical care. I recently went to urgent care […]
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The first participant has been dosed in a large clinical trial testing the experimental oral therapy votoplam (formerly PTC518) in adults with early-stage Huntington’s disease. That’s according to a press release from PTC Therapeutics, the therapy’s original developer, announcing its latest financial results and business updates. Novartis is now leading votoplam’s clinical development and owns […]
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My wife, Jill, who is gene-positive with Huntington’s disease (HD), shared a serious issue she’s been struggling with lately: “I hate showers, and if I hate them now, how will I push through the uncomfortableness when several HD symptoms make it too difficult?” she said. This was not the kind of casual complaint we usually […]
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Editor’s note: This story includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention helpline at findahelpline.com. While Huntington’s Disease Awareness Month brings greater awareness, this […]
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May marks Huntington’s Disease Awareness Month, and organizations worldwide are promoting greater awareness and understanding of the condition, as well as support for patients, families, and caregivers affected by it. Huntington’s disease (HD) is a genetic disorder that causes progressive damage and death to nerve cells in the brain. Huntington’s symptoms include movement disorders, cognitive […]
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Mothers are often told that, once they have a child, their heart now lives outside their body. For years, that line sounded like something stitched on a pillow you buy at a Hallmark store and then feel guilty about never dusting. For my wife, Jill, it stopped being a cliche and became a fact of […]
The post Living in the present, even when Huntington’s reminds us of the future appeared first on Huntington's Disease News.
One of the hardest things Huntington’s disease has taught me is how to accept help without attaching shame to it. I live independently, and I am proud of that. My independence matters deeply to me. It’s not just about paying bills, keeping appointments, or managing my home. It’s about dignity. It’s about knowing that I […]
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Electroencephalography (EEG), a noninvasive test of electrical activity in the brain, may be a useful tool to help track disease progression in Huntington’s disease, as patients tend to show certain characteristic abnormalities that are associated with symptom severity. “EEG may serve as a potential biomarker for early diagnosis and monitoring of Huntington’s,” the researchers wrote. […]
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The first time my wife, Jill, almost cried in front of me, Huntington’s disease (HD) was already part of our story, just not the headline yet. It was there in the background, like a low drumbeat under all the usual early-relationship excitement: new love, big plans, and a future we believed we could completely script ourselves. From […]
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For a long time, I confused boundaries with rejection. I thought boundaries meant distance. I thought they meant being difficult, cold, or selfish. I thought that if I loved people deeply enough, I should be able to keep showing up, giving, understanding, and absorbing whatever came my way. I believed that being a good person […]
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A new measure, called the Huntington’s Disease-Behavioral Questionnaire (HD-BQ), effectively captures behavioral symptoms in people with Huntington’s disease, as well as differences between patient reports and those of their companions, a study shows. Companions reported more widespread and severe symptoms than patients, particularly in cognitive domains such as concentration, switching thoughts or activities, judgment, and decisiveness. “By […]
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Last month, I walked into our kitchen to find what looked like a crime scene. Blood drops dotted the counter, and my wife, Jill, stood at the sink with bandages wrapped around several fingers, laughing as she rinsed off our newly sharpened knives. My heart sank. My first thought wasn’t about the blood or the […]
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There is a particular kind of exhaustion that comes from being sick and still feeling responsible for everyone else’s comfort. It is one thing to manage Huntington’s disease. It is another thing entirely to manage the emotions, assumptions, awkwardness, and reactions that can swirl around it. Sometimes I walk into a room already carrying enough: […]
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Levels of certain blood markers that are tested as part of routine medical care, such as cholesterol and liver injury indicators, may help predict how fast Huntington’s disease progresses, a new study found. According to the researchers, such routine blood tests “may help anticipating HD [Huntington’s disease] progression.” The results of such testing also “may […]
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The other evening, my wife, Jill, and I were watching a YouTube show that explored how people cope with loss. As the narrator was describing the seven stages of grief — shock, denial, anger, bargaining, depression, acceptance, and hope — Jill clicked the pause button. In our years together, especially since her Huntington’s disease diagnosis, […]
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There is a particular kind of pain that comes from knowing something is wrong in your body and having medical professionals tell you otherwise. For many people living with Huntington’s disease, the road to diagnosis is already long, confusing, and frightening. But for some of us, that road is made even harder by medical gaslighting, […]
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Genistein, a compound found in soy products, was seen to reduce nerve cell damage and improve motor function and coordination in a mouse model of Huntington’s disease — alongside other benefits, which included extending the animals’ lifespan. That’s according to new research by scientists in the U.S. and South Korea, who determined that the beneficial […]
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