Columns

The new year is in full swing, and I’m excited for what 2023 has in store for the Huntington’s disease (HD) community. Looking back, it feels like the past three years haven’t gone in the right direction. We still lack disease-modifying therapies, legislative support for the HD…

In 2018, my wife, Jill, started showing classic signs of Huntington’s disease (HD) — including involuntary movements, called chorea — so she decided to go through with genetic testing. After she was declared gene-positive for HD, she shared the devastating news with our daughter, Alexus. The conversation…

I’m a journalist, so my mind always wants to figure out the “why” of things. That means I ask questions about everything. Sometimes I get answers I don’t want to hear. Here’s a recent example. My wife, Jill, and our daughter, Alexus, both of whom are gene-positive for…

For months, people from across the U.S. have been working hard with members of the Huntington’s Disease Society of America’s (HDSA) advocacy caucus to convince members of Congress to pass the Huntington’s Disease Parity Act. My wife, Jill, who is gene-positive…

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…

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…