Columns

The other day, my wife, Jill, shared some life advice to our 25-year-old nephew, Dylan, who’s living and working in a monastery in Eastern Europe, trying to figure out what he wants to do in his life. He’s got many gifts. He’s a talented artist and musician. He loves…

Branaplam (LMI070), an experimental oral therapy for Huntington’s disease that’s currently in early clinical trials, reduces levels of the mutant huntingtin protein by interfering with a process called mRNA splicing, a new study reveals. “Here, we delineated the mechanism of action of Branaplam,” researchers wrote. The study, “…

Recently, my wife, Jill, and I were talking about a book I was reading. She commented that I don’t just read books, I devour them. As the conversation continued, we started talking about how both of our fathers liked to read as well. Jill’s dad passed away in 2011…

As I write this first paragraph, I’m in the living room. My wife, Jill, is on the sofa next to me doing her nails, and my dog, Baby Girl, is several feet away on the floor under the piano, sleeping on her side. I can hear her breathing. By…

Deciding whether to undergo genetic testing for Huntington’s disease (HD) is a personal choice. As Ana Pena reports in a 2019 article for Huntington’s Disease News, researchers have found that “as many as 90% of individuals who have a parent with Huntington’s choose not to take a…

Recently, my wife, Jill, who is gene-positive for Huntington’s disease (HD), took a trip to Boston to participate in an observational HD study. She had been looking forward to it in part because she’d be able to visit her brother and his family and stay at our daughter‘s…

Tiny moments. Life is full of them. For instance: I was not expecting the phone call. My wife, Jill, always texts me when she wakes up. She never calls. But during a recent morning, my cellphone rang while I was at work, and when I picked up, I saw…

Ever since my mom was diagnosed with Huntington’s disease (HD) in 1995, I’ve been attending all types of support, fundraising, and educational events. I’ve had the honor of traveling the world and meeting people from many countries who’ve been affected by HD. When I was young, my parents…

My wife, Jill, and I selected “A Family Tradition” as the name of this column because of the genetic nature of Huntington’s disease (HD). If someone has the HD gene mutation, their children have a 50% chance of inheriting the disease. It’s a tradition that no one…

Second in a series. Read part one. As my wife, Jill, experiences Huntington’s disease (HD) progression, we must prepare for all aspects of her care. Recently, she wanted to start thinking about our financial future. She knows that HD can be a financial burden, as the rare…