My dad spent the last four years of his life in the Warberries Nursing Home in Torquay, Devon, England, suffering from Huntington’s disease. He’d been moved there when his ability to swallow and his speech had deteriorated. The building was a Victorian Grade…
My brother, Gavin, was diagnosed with Huntington’s disease in January 2022, at 42 years old. The disease has already taken the lives of our dad, grandfather, and grandmother. In recent months, Gavin’s cognitive impairment has seemed to worsen just as his anger and aggression have…
My late father had been suffering from Huntington’s disease for about two years, and our family was struggling to manage his care ourselves. We were extremely fortunate to find Dad a personal assistant, Graham, who was the best we could’ve wished for. He was similar in age to Dad…
Note: This column describes the experiences of the author’s father with tetrabenazine (often known by its brand name, Xenazine). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. My dad, who had Huntington’s disease, was moved…
The contents of Ingrezza (valbenazine) can be taken from their capsules and crushed before being sprinkled on soft foods or given via a feeding tube to Huntington’s disease patients who have difficulty swallowing whole capsules, a preclinical study showed. A Neurocrine Biosciences’ oral therapy, Ingrezza…
My late father, David, never wanted to take the genetic test for Huntington’s disease, an illness that had already taken the life of his own father and his grandmother. He knew there was neither a cure nor a treatment to slow the disease’s progression. For many years, he…
Forms of mutant huntingtin (mHTT) protein that don’t clump initially drive early disease progression in people with Huntington’s disease, according to a study wherein patient-derived cells were transplanted into newborn mice. These soluble forms of mHTT were found to cause structural changes in the neurons producing them and to…
My brother, Gavin, has Huntington’s disease. It causes problems with his cognitive, behavioral, emotional, and sensory skills. We’re fortunate to have support from a care adviser from the Huntington’s Disease Association, who has provided my family with strategies to help manage Gavin’s symptoms.
Nearly a year of treatment with Neurocrine Biosciences’ Ingrezza (valbenazine) leads to sustained reductions in uncontrolled movements known as chorea in adults with Huntington’s disease, according to interim data from a Phase 3 trial called KINECT-HD2. “The 50-week data from the ongoing KINECT-HD2 study provide insight on the…
I met my first genetic counselor to discuss testing for Huntington’s disease when I was 22 years old and we feared my dad was at risk for developing the disease. He’d stopped working and driving at the time, and the counselor said his apathy and anxiety could…
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