Columns

I couldn’t believe what I’d just heard. My wife, Jill, told me she recognized a song but couldn’t remember the lyrics. This sent me spiraling down what she calls the Huntington’s Disease Black Hole. It made me wonder if her memory lapse was yet another symptom of…

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…

As I type this, my heart swells with emotion. My family’s journey isn’t the easiest, but we savor it because we’re grateful for every precious second we spend together. My wife, Jill, battles Huntington’s disease (HD) with great resiliency and courage, but it’s obvious that the condition has…

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…

After my wife, Jill, started experiencing symptoms that led her to suspect she had inherited the faulty gene that causes Huntington’s disease (HD), she decided to find out for certain. When she told me she wanted to have her DNA tested for HD, my first question…

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…

Last year, a chat about a Halloween decoration led to a conversation about Huntington’s disease (HD). It all began when my wife, Jill, picked up an item at the home of our daughter, Alexus, when we visited her in Boston. It was a long, hollow tube —…