Today kicks off the 40th annual convention of the Huntington’s Disease Society of America (HDSA), an event the association says provides an opportunity for the Huntington’s disease community to come together to “learn, share, and build hope for the future.” This year’s convention is taking place in…
The first Huntington’s disease patient has been dosed in a Phase 2/3 clinical trial testing SKY-0515, Skyhawk Therapeutics‘ oral disease-modifying therapy, in adults with the neurodegenerative condition. The study, dubbed FALCON-HD (NCT06873334), is expected to enroll up to…
For those of us living with Huntington’s disease, the idea of calm can sometimes feel like a distant dream. Between the unpredictable nature of our symptoms, the emotional toll of navigating a complex diagnosis, and the misunderstandings we often face from the outside world, finding even a moment of…
The Huntington’s Disease Digital Motor Score (HDDMS), a new measure based on four motor tests that are done through a smartphone app, may be able to detect Huntington’s disease progression with greater sensitivity than current standard tools, a study reports. “Our findings suggest that incorporating the HDDMS in clinical trials…
Huntington’s disease is not the only trait my wife, Jill, inherited from her father. Her sense of humor, justice, and fortitude, while not genetic, was shaped by him as well. Recently, I realized that what we use for comic relief could be a way to advocate for people with…
When you live with Huntington’s disease, your world begins to shift in ways you never imagined. Things that once felt routine, such as tying your shoes, remembering appointments, or going for a walk, can suddenly feel like climbing a mountain. For many of us in the Huntington’s community, these…
Introducing small interruptions into the abnormally long CAG repeat expansion that causes Huntington’s disease can stabilize or even reduce the length of that DNA stretch, which would be expected to slow disease progression. These are the findings of a study that tested base editing, a technique that changes a…
If you ever met my wife, Jill, you’d know she has a handful of guidelines that she lives by — quirky, heartfelt philosophies that influence her approach to life. One of my favorites is her unofficial family motto: “Live like you’re a tourist.” It’s a phrase she uses to explain an idea…
One of the most common questions I hear as someone living with Huntington’s disease (HD) is, “Where do you get your medical care?” I always smile and say, “At the Huntington’s Disease Society of America Center of Excellence at the Cleveland Clinic,” because I’m genuinely grateful to be under…
uniQure plans to submit a biologics license application (BLA) to the U.S. Food and Drug Administration (FDA) early next year seeking approval of its gene therapy candidate AMT-130 for Huntington’s disease. Top-line, three-year data from the ongoing clinical trials that will support that application are due in the…
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