Columns

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…

The U.S. Food and Drug Administration (FDA) is putting on hold Voyager Therapeutics’ request to test VY-HTT01, its investigational gene therapy for Huntington’s disease, in a clinical trial. The clinical hold will be kept in place until certain issues with VY-HTT01’s chemistry, manufacturing, and controls are…

I have decided to get my wife a T-shirt that reads, “It’s not you, it’s me.” I want to get it for her so she can wear it each time she visits a doctor. As if her having Huntington’s disease is not bad enough, eight months ago she started…

As I mentioned in my debut column of “Negative to Positives” a couple weeks ago, I have a genuine passion for helping those undergoing genetic testing for Huntington’s disease, which is an incredibly challenging life hurdle. Many members of this community watch their parents slowly and progressively decline, and…

I’m protective, a trait typical of most men. For example, I will drive for 18 hours across the country while my wife sleeps in the passenger seat. Jill has trouble sleeping in general, and the motion of the car acts as a sedative, rocking her to sleep. Long…

When I first understood that I was going to be a writer, I did what everyone does upon discovering a passion: I wrote and wrote and wrote. I realized that the best writing gushes with precise details. That quality of writing required a lot of practice. So, I kept a…

On Saturday, the last season of the Netflix series “The Good Place” began streaming. To me, it was the best ending of any TV show I have ever seen. My boyfriend and I cried. I’ll try to avoid spoilers, because…

Like many of you reading, I am from a Huntington’s disease (HD) family. I learned at the young age of 9 that my mom would progressively, slowly lose her ability to do absolutely everything. Around that same time, I also learned I had a 50% chance of inheriting that same…

The anniversary of my sister’s death is coming up in about a month. Rose died on Halloween last year after a massive red oak tree fell on the car she was in during a fierce storm. The car was parked in her driveway, and the tree was from a…

My wife, Jill, and I have not been to the local movie theater in months. It’s been so long that we can’t remember the last movie we saw there. By contrast, we averaged about two movies a month before the pandemic struck. With the recent reopening of our town’s theaters,…