Most adults with the genetic defect associated with Huntington’s disease were completely able to perform daily activities and tasks at a first assessment, and maintained such skills over time, according to data from a natural history study of the neurodegenerative condition. That study assessed participants using the total functioning…
My wife, Jill, recently challenged a sentiment she hears far too often: that people with Huntington’s disease should feel “grateful” it’s a slow-moving condition, unlike amyotrophic lateral sclerosis (ALS). Her reaction struck a deep chord in me and revealed an important truth about how we view devastating rare and…
The sun filters through the trees, casting golden light onto the path ahead of me. The crisp morning air carries the scent of damp earth, and with each step, I feel more connected to the world around me. Nature has become more than just a backdrop to my life; it…
Researchers were able to promote the formation of new neurons that integrated into existing motor circuits and helped repair damage and influence motor behavior in the brain of a mouse model of Huntington’s disease, a study showed. “Our research shows that we can encourage the brain’s own cells to…
As my wife, Jill, and I sat at a sidewalk cafe, we basked in the warmth of the sun — a welcome feeling after what had felt like a lifetime of gloomy winter weather. Jill’s diagnosis of Huntington’s disease is an unwelcome companion in our lives, but it’s also…
Spring has always been my favorite season, not just because of the warmer weather or the return of blossoms, but because it’s a reminder that renewal is possible. No matter how harsh the winter has been, no matter how barren the trees may look, life still finds a way to…
As I entered our living room recently, I was met with a scene that caught me off guard. My wife, Jill, was sitting on the couch, tears streaming down her face while watching “The Masked Singer.” This wasn’t unusual in itself; she loves the show for its music…
Mental health problems are common in Huntington’s disease, but there isn’t much data on patients’ use of psychiatric medications, a review study reports. “Although [neuropsychiatric problems] in [Huntington’s disease] are common, hardly any clinical trials have addressed their treatment,” the study’s researchers wrote. “As a result, evidence that…
When I received the invitation from Brown University’s School of Public Health to discuss my memoir, “We Exist,” I felt deeply honored. As an advocate for Huntington’s disease (HD) awareness, particularly from the perspective of a marginalized community, I knew this was an invaluable opportunity to engage with…
Daily treatment with Ingrezza (valbenazine) eases the jerky, involuntary movements known as chorea across different body regions in people with Huntington’s disease, according to new data analyses from the KINECT-HD trial. The primary analyses from the Phase 3 KINECT-HD study (NCT04102579) showed that the oral therapy…
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