Columns

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…

As of this writing, I’m preparing to attend the Huntington’s Disease Society of America’s (HDSA) annual convention in Atlanta from June 9–11. It’s been three years since the convention was last held in person, in Boston. Much has happened around the world since then, but we’re finally able to…

Since her 2018 diagnosis as gene-positive for Huntington’s disease (HD), my wife, Jill, has made visiting family a priority. We drive together for shorter trips when we can because our 13-year-old dog, Baby Girl, travels with us. For the trips that are too far to drive,…

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…