Columns

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 —…

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…

My wife, Jill, recently discovered that what she’d thought was a symptom of her Huntington’s disease (HD) was really something else. It reminded us that just because she has a rare, terminal illness doesn’t mean it’s the cause of every medical issue. I began to realize this…

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…

Talk therapy is great, but finding someone who understands you and meets your needs is the key to its success. When my wife, Jill, was diagnosed with Huntington’s disease (HD) in 2018, the doctor recommended that she see a therapist. While Jill had nothing against seeing someone for…

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…

Today, Oct. 11, is my 37th birthday. Where does the time go? In my last column, I wrote about my lengthy journey since my mom was diagnosed with Huntington’s disease (HD) in 1995. As I sit back and reflect, I realize how much my own genetic test…

My wife, Jill, and I were recently talking about an encounter I had. As sometimes happens, a result of the conversation with Jill was a lesson that developed over the next few days about Jill’s terminal illness. The conversation centered on feeling belittled in my work as a…