“When it started getting bad, it was like watching her drown.” That’s how a young man named Morgan described watching his mother’s Huntington’s disease (HD) progress. His interview was part of a video created by the Huntington’s Disease Youth Organization (HDYO) about the condition’s impact on young…

“And my mother … that was a little too much for her nerves, her something.” This comment, made in 1940, was the first time American singer-songwriter Woody Guthrie had publicly alluded to his mother’s Huntington’s disease. Guthrie was born on July 14, 1912, in Okemah, Oklahoma,…

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…

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…

In the summer of 2022, my wife, Jill, and I attended an eye-opening event that made me understand exactly what Huntington’s disease (HD) does to a loved one. It was a family reunion hosted by Jill’s paternal relatives. Her father had HD, as do multiple people on his…

I love clichés. I love to share these small, yet overly heard nuggets of wisdom whenever I can. Who cares if they prompt an eye roll or two? I use them to explain things so often that my entire family has come to expect it. When our dog, Baby…

In a recent column, I shared that I was battling a serious infection, which led to a four-day hospital stay. My main concern was about my wife, Jill, who is gene-positive for Huntington’s disease (HD), and how frustrating it was for me to be sick when it’s…

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…

I started doing a lot of research about genetic testing for Huntington’s disease (HD) in 2019, after years of hearing stories from people in the community who’d had poor experiences. I came to the conclusion about a year into my research that if I didn’t try do something about…