Columns

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…

The school year recently ended, which may be good for students and teachers, but not for my wife, Jill. The last week of school is a lot like walking through a car wash for her. Because she is the school secretary, she still works a lot as everyone else winds…

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…

Last weekend, I had a bunch of newly vaccinated friends over to help me paint my new condo. My partner and I had just closed on it two days earlier, and I was excited to make the place feel like our own. We finished the entire condo in…

My wife, Jill, and her phone are like Siamese twins — attached all the time. At least, that’s how it seems. Jill, who has Huntington’s disease (HD), stares into her phone for hours when we are at home, playing puzzle, tile, and problem-solving games such as Tile Master,…

I’ve written before that I was unsure if I was ready to get involved in Huntington’s disease community events. It’s been difficult for me to determine if the emotional cost is worth the risk. A few months ago, I finally…

Getting the Huntington’s disease genetic test is a major life decision that weighs heavily on a person socially, emotionally, psychologically, and physically. I’ve written about the genetic testing process and its ramifications in many of my previous columns. But what if a genetic test didn’t only tell you your…

I recently gave a presentation at an event, during which I explained that my wife and daughter have Huntington’s disease (HD). I then showed a video that illustrated the devastating toll the illness can take on a gene-positive person’s mind and body. After the presentation ended, I wasn’t surprised…

This week, my wife, Jill, bought meals from HelloFresh, a company that sells kits with the ingredients and the recipes to cook at home. Apparently, because of the pandemic, something known as “cooking fatigue” has led many people to tire of the repetitive chore of starting from scratch.

I recently received an email from Kelli Yoder, the communications manager at Adira Foundation, an organization whose mission is to “invest in better lives for people with neurodegenerative diseases.” She wrote that the foundation had enlisted the help of StoryCorps, a…