Columns

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…

In a recent column, I wrote about the high emotional cost my wife, Jill, and I face by writing a weekly column about her journey being gene-positive for Huntington’s disease (HD). It doesn’t help that our daughter is also gene-positive. Jill wondered if our weekly column was…

In my previous column, I shared that the U.S. Food and Drug Administration (FDA) accepted the request submitted by my fellow advocates and me to host a patient listening session focused on people who are gene-positive for Huntington’s disease (HD), but have not yet developed symptoms. Our session is…

A recent text message reminded me that just because someone has Huntington’s disease (HD) doesn’t mean it will cause their death. It also helped me better understand the importance of showing someone how much you love and care for them — especially when they’re not feeling well. The text…

I began this column about seven months after my wife, Jill, discovered she was gene-positive for Huntington’s disease (HD) in 2018. Every week since then, Jill and I discuss what I should write about, and this week was no different. As we brainstormed, Jill asked me a couple…