Columns

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…

Last in a series. Read part one. At the top of the list of why I can’t stand Huntington’s disease (HD) is the fact that my beloved wife, Jill, and daughter, Alexus, have it and, as a result, are going to suffer greatly. Another reason is that…

First in a two-part series. Something astounding happened recently. My wife, Jill, found someone who knows more about Huntington’s disease (HD) than she does. Because her father was gene-positive for HD, Jill saw firsthand what the disease does to a person. Many people on his side of…

As I’ve shared in previous columns, several Huntington’s disease (HD) advocates, including myself, were granted a patient listening session with the U.S. Food and Drug Administration (FDA), focused on people who are gene-positive for HD but have not yet developed symptoms. In preparation for the session, which took…

Recently, I was discussing the meaning of marriage with a young couple, who told me they heard marriage can be defined three different ways: One is where both people say, “I do.” The second way is, “I do … do I?” And the third is, “I do — until I…

Last November, our daughter, Alexus, who is gene-positive for Huntington’s disease (HD), got married to a wonderful man named René. The civil ceremony took place in a restaurant in Boston. It was short, sweet, and relatively uncomplicated — exactly what the newlyweds wanted. They also wanted a…

In a previous column, I wrote about my wife, Jill, applying for the TSA PreCheck with the U.S. Transportation Security Administration (TSA). As someone who was diagnosed as gene-positive for Huntington’s disease (HD) in 2018, she wanted to apply to ease her stress when she…

The Huntington’s Disease Society of America’s (HDSA) annual convention is one of my favorite events to attend, as I wrote in my previous column. It’s a weekend full of learning from experts, hearing about the latest clinical trial and research updates, connecting with community stakeholders, and enjoying…

My wife, Jill, has known of Jennifer Simpson, the assistant director of youth and community services at the Huntington’s Disease Society of America, for several months now. Jill first saw her in several YouTube videos on topics related to Huntington’s disease (HD) and was then part of…

Recently, my wife, Jill, underwent testing for attention-deficit hyperactivity disorder (ADHD) and discovered that she has it. This was not shocking news, as readers of this column know. One of the questions her nurse practitioner asked was, “How did you live for 44 years without being diagnosed with…