A Genetic Lottery
— Rebecca Field

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…

A four-week titration kit for starting on Austedo (deutetrabenazine) — an approved therapy for chorea, or involuntary muscle contractions, due to Huntington’s disease — has so far been well-received by patients in a Phase 4 clinical trial. Titration, in medicine, means starting a drug at a low dose…

My brother, Gavin, was recently diagnosed with Huntington’s disease. It has affected his sensory processing of vision, hearing, taste, smell, touch, and the proprioceptive, vestibular, and interoceptive systems. With Huntington’s disease, this sensory information becomes muddled, leading to many impairments and frustrations. Gavin has…

The U.S. Food and Drug Administration (FDA) has granted orphan drug status to SAGE-718, Sage Therapeutics’ experimental oral therapy for Huntington’s disease. The FDA gives this designation to therapies that have the potential to treat rare diseases, which are defined as conditions that affect fewer than 200,000 people…

Five years ago, I grew increasingly concerned about my brother, Gavin. He was aggressive, angry, anxious, self-neglecting, and unemployed, and he appeared to be coping poorly with his Huntington’s disease. I reached out to our local Huntington’s care adviser, who explained that most of my brother’s emotional and behavioral…

People with Huntington’s disease were found to have a widespread deficiency of selenium — a trace mineral found naturally in foods such as seafood and Brazil nuts — in their brains, revealing a new potential therapeutic target, according to researchers. Alterations in the levels of other biologically active…

Blocking immune system proteins that are part of the body’s complement cascade — which helps the immune system to fight infection — was found to protect nerve cell connections between two brain regions known to be affected in Huntington’s disease in a mouse model of the rare disorder. It…

I remember my family speaking openly about Huntington’s disease (HD) throughout my childhood. Our paternal great-grandmother had passed away before my brother and I were born, and our paternal grandfather passed when we were very young. Both had HD. Growing up, my brother and I heard stories about our…