Columns

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

Ever since my wife, Jill, and our daughter were tested and diagnosed as gene positive for Huntington’s disease, I have been impressed with their positive attitudes and outlook for their future. Today I realized their attitudes are the long-standing views of their family. I realized this after Jill spoke…

I spent about two months weighing the pros and cons of getting bangs again. On one hand, bangs work well with the shape of my face and eyes. On the other, I’d have to wash them every morning. They’re are a lot of work, and getting them is a commitment…

What makes a great marriage? That age-old question has been the subject of many books over the years, hundreds of talk shows, and millions of arguments. Money, especially fighting about how much to spend, is always a big topic. Many think that if you are an active listener,…

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…