Columns

Did you ever watch cartoons when you were young? One of my favorites as a child was “Scooby-Doo,” an animated cartoon series that featured teenagers Fred, Daphne, Velma, and Shaggy. They also had a talking brown Great Dane named Scooby-Doo. This motley crew of mystery-solvers would travel from town…

If you think adulting is hard, wait until you are empty nesting. My wife, Jill, and I have a daughter who lives in the Northeast. Five years ago, she graduated from high school and went to experience college life at MIT in Cambridge, Massachusetts. We are proud of…

During college, I always joked with my friends that I would drop out of school to open a bar in Canada (I prefer their healthcare system). MIT was very stressful, and my reaction to unenjoyable situations is to want to escape. Based on…

The last few weeks have been somewhat trying for Jill. She has been plagued with giant hive welts. They cover her arms, legs, and torso. Sometimes her lips or eyes will randomly swell. She jokes, “People pay a whole lot of money to have puffy lips.” She hasn’t been able…

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…

One of my recent columns was about the Huntington’s Disease Society of America’s annual convention. I participated in a few groups over Zoom because I have to be involved in every step of the journey. We have known about this conference for years because Jill’s mother tries to attend…

We live in Illinois, where the weather can be unpredictable. Some days we have perfect weather — 70 degrees and sunny — followed immediately by snow. We may not see the sun for days. When we moved here, we quickly discovered that you have to enjoy the beautiful days…

I am messy. I’ve always been messy. My desk at work looks like an explosion of papers. I love to read, so it’s not uncommon for my bedroom floor to have books scattered like leaves on the ground on a fall day. I also tend to buy the same product…

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…

My grandmother and my mom taught me how to cook. Growing up, I would make apple pies with my grandmother for the holidays, and I learned fractions by doing recipes with my mother. It amazes me how much of our lives is centered around what essentially is our…