Columns

I’ve always tried to stay alert to the needs of the Huntington’s disease community by listening during support groups, learning at conferences and conventions, and following along with the many Huntington’s conversations on social media platforms. One topic that consistently comes up in conversations is genetic testing. Everyone has their…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…

When I write this column every week, I try to only share the things that can, and will, affect my family’s battle with Huntington’s disease. Today, I would like to write about something that affects people with every disease and the families who care for them: voting.

When I was a sophomore in college, I debated going blond. It was January, and every winter, I usually cut or dye my hair. I always need a change of pace during winter. Normally, I go with red or black, and my mom can easily dye my hair.

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…