Columns

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…

One of U.S. President John F. Kennedy’s dreams was to send men to the moon and have them return safely to Earth. “We choose to go to the moon,” he told a crowd of about 40,000 people at Rice University’s football stadium in September 1962. “We choose to go…

“Dancing at the Vatican” is a 2019 documentary film created and narrated by Charles Sabine, a former television reporter and foreign correspondent. It shines a spotlight on several families from Latin America who have Huntington’s disease (HD). The film culminates with the families, who are from poor towns in…

Every day, people around the world learn more about Huntington’s disease (HD). We know so much today, but we will know more tomorrow, and this knowledge will continue to exponentially grow. Researchers, scientists, clinicians, patients, caregivers, and advocates all have knowledge to gain. If you ever think you know it…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…