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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An early-stage clinical trial designed to test a novel stem cell therapy — one designed to replace lost or damaged nerve cells in the brain — in people with Huntington’s disease is now recruiting adults with the genetic condition at its single site in California. The Phase 1/2 trial, dubbed REGEN4HD (NCT07451613), is mainly evaluating the […]
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My wife, Jill, and I recently went to Target to shop for new baskets. The trip reminded us of when we helped our daughter move earlier this year, and how that trip helped us to see each other more clearly, which sits at the heart of how we live with Huntington’s disease (HD). Jill, who […]
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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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