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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SOM Biotech is preparing to launch a global late-stage clinical trial to evaluate whether SOM3355, its experimental oral therapy, can safely and effectively ease movement problems and other symptoms in people with Huntington’s disease. If positive, data from the upcoming Phase 3 trial, which is expected to start early next year, will be used to […]
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A social worker and Huntington’s disease advocate says planning ahead for emergencies — and paying attention to early signs of changing symptoms and needs — can help support better care during a crisis for people with the genetic condition. The key, according to Carlette McDaniels, a therapist and clinical social worker from New York, who’s also a member […]
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Every member of the Huntington’s disease community — patients, their family members, friends, and supporters — plays a crucial role in advocating for legislative and policy changes that will make a better future for people with the genetic disorder. That’s the message from Phyllis Foxworth, senior manager of advocacy at the Huntington’s Disease Society of […]
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My wife, Jill, has has been watching a lot of “lawtube” videos on YouTube lately. She likes tracking court-related cases as a way to slow the decline from Huntington’s disease (HD). The cases, and anything relating to legal issues, hold her attention. It’s part of her growing bag of tricks to help her cope with […]
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Huntington’s Disease Society of America (HDSA) leaders at the group’s 41st annual convention unveiled a new strategic plan and mission statement to meet the needs of Huntington’s disease patients, including plans to expand research programs and Centers of Excellence and build a strong network to fight the disease. “We are standing at a very important […]
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Teva Pharmaceuticals’ Austedo (deutetrabenazine) and its extended-release formulation, Austedo XR — approved to treat chorea, or involuntary movements, in people with Huntington’s disease — have functional and social benefits for both patients and their caregivers. That’s according to real-world data presented today by Debbi Fox-Davis, Teva‘s director of patient engagement and advocacy, and Hannah Roth, […]
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Traveling with Huntington’s disease requires more than packing a suitcase. It requires planning, patience, self-advocacy, and a deep understanding of my body. I love the idea of seeing new places, speaking at events, visiting loved ones, and saying yes to meaningful opportunities, but traveling while symptomatic means I have to be realistic about what my […]
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The 41st Huntington’s Disease Society of America (HDSA) convention kicks off today in Phoenix, bringing together a sold-out crowd of patients, caregivers, families, and researchers. Running through Saturday, the three-day annual event focuses on providing practical support for navigating life with Huntington’s disease, with some sessions set to be livestreamed for remote viewers. Conference registration […]
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UniQure plans to ask the U.S Food and Drug Administration (FDA) for accelerated approval of AMT-130 to treat Huntington’s disease in the next few months, after the agency dropped its request for a new clinical trial. The agency agreed in a recent meeting that the three-year analysis from two ongoing Phase 1/2 trials — one in […]
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I thought I understood the highs and lows that come with Huntington’s disease, including the unfiltered comments and raw emotions my wife, Jill, sometimes shares with me. I have seen her frustration, her dark humor, and her moments of deep sadness. But nothing prepared me for what it feels like to sit on the couch […]
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Fear. Everyone has it. Everyone has that something they’re afraid of. I have many — of heights, of what tomorrow holds, all of it. But when you’re in a Huntington’s disease (HD) family, fear feels amplified. Ever since we got my husband Nathan’s HD diagnosis 10 years ago, it has been a constant companion. There’s […]
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One of the hardest parts of living with Huntington’s disease (HD) is realizing that the disease does not only affect movement. It can also affect emotions, reactions, patience, and the way the brain processes stress. Many people see HD through chorea, balance changes, or visible symptoms. But some of the most difficult symptoms are the […]
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Blocking an inflammatory pathway in the brain called cGAS-STING may slow the progression of Huntington’s disease, according to a study using a mouse model of the disease. Disrupting this pathway, either by deleting the cGAS gene or using an experimental small-molecule compound that suppresses STING, reduced brain inflammation and improved motor coordination and balance in […]
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Huntington’s disease has changed so much about our life, especially for my wife, Jill. Her balance isn’t what it used to be, and falls are a real concern. In a house where stability is fragile, a small creature racing around our feet sounds like the last thing we should invite in. Yet when Jill said she […]
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Before Huntington’s disease (HD) became part of my daily life, I thought legacy was something people created at the end of their lives. I thought it was about accomplishments, titles, money, degrees, or what people would say about you after you were gone. I thought legacy was distant, something I had time to figure out […]
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The approved oral medication Austedo (deutetrabenazine) or its extended-release formulation Austedo XR can help reduce the impact of Huntington’s disease-associated chorea, or involuntary movements, on patients’ daily activities and social interactions, while also easing the emotional and social burden on caregivers. Those are the findings of a U.S. real-world survey conducted in collaboration with the […]
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Turn on the news, and it’s easy to witness a jet stream of anger swirling around the main headlines in our world today: wars, spikes in the cost of living, political campaigns, and more. In observing the various levels of displeasure these headlines provoke, I started to wonder, why do we waste our precious, numbered […]
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Living with Huntington’s disease (HD) has taught me that food is not just about satisfying hunger. Food is energy. Food is stability. Food is comfort. And it is one of the ways I care for a body that is constantly working harder than most people realize. When people think about HD, topics like movement, balance, […]
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