Columns

Two years ago, my wife, Jill, took a genetic test and discovered she has Huntington’s disease. Thanksgiving wasn’t the same that year. Last year, two events occurred that made me feel as though Mike Tyson had punched me in the gut: My daughter took a genetic test and found…

As I briefly touched on in my previous column, “Opportunities for a Better Genetic Testing Process,” the testing process in the Huntington’s disease community is a bit like the Wild West. Depending on your location, there are so many variables that make going through testing way more stressful than…

At some point in the history of mankind, someone said, “Let’s raise awareness about [topic A].” And because “imitation is the sincerest form of flattery,” as Oscar Wilde noted, someone else said, “Hey, if they can raise awareness about [topic A], let’s celebrate our favorite topic.” Now, January is…

The events of the past week have reminded me just how tough my wife, Jill, is. I’m grateful for her grit because I know she will need it as the conditions of her Huntington’s disease worsen as the years go by. Jill is the type of person who…

When my sister died in a tragic accident a year ago, grief caused me to lose my appetite. As a result, over the next two months, I lost around 13 pounds. I found myself being content with one full meal a day. Losing weight like that usually isn’t…

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…