Columns

Having a parent with Huntington’s disease influences my life in many ways, most of which I’m likely unaware of. It influences everything from my plans for the future to how I view the world. My mom raised me to be independent (like that…

“Do you believe in miracles?” Sports announcer Al Michaels uttered that sentence on national television in February 1980 during an Olympic hockey game between the United States and the Soviet Union. During the game, which was later dubbed the “Miracle on Ice,” the Americans were heavy underdogs. But that…

My wife, Jill, and I do not dwell on her Huntington’s disease (HD). We know it’s there, of course, lurking like gray, angry clouds and chilly air that say winter is coming. But from time to time, we do talk about it. The other night, Jill used a…

One of the most inspirational definitions of kindness I’ve ever read comes from Father Lawrence G. Lovasik’s book “The Hidden Power of Kindness“: “Not only is kindness due to everyone, but a special kindness is due to everyone. Kindness is not kindness unless it is special. Its charm…

I like to keep things organized. Everything should have a place, even if it’s on the floor next to my bed, like my clothes. Even my problems have a place: Each one has a box. No, I don’t have a box sitting around in my…

I like learning, especially from smart people. My wife, Jill, is one of the smartest I know. With that in mind, I wanted her wisdom from the years she spent caring for her father, who had Huntington’s disease (HD) and died in 2011. Following are some of the lessons…

I have previously discussed in this space my wife Jill’s dislike of visiting the doctor. I use the word “dislike,” but she would use the word “hate.” Since Jill was diagnosed with Huntington’s disease in 2018, I try to go with her to appointments when she asks me to.

I love to read. I developed my affinity for books as a young child, when I would accompany my father on his trips to the library. A joke in my family is that when I die, I want to be buried under a library. That way, my ghost will always…

In a previous column, I talked about the many questions one might have when signing up for a clinical trial. Lots of questions, concerns, risks, hope, and opportunity come with participating in a trial that requires you to take an experimental medicine. But participation in clinical trials isn’t…

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…