Columns

One of summer’s guilty pleasures is watching mindless movies. On a recent weekend, Jill and I watched “Bill and Ted Face the Music,” which is so egregiously and heinously bad, it’s good, dude. (This is how the time-traveling characters talk to each other. Needless to say, the dialogue is…

About a week ago, my boyfriend and I treated ourselves to Qdoba for lunch. I am in love with their food, as most people in my life know, especially their queso and chips. They serve way more chips than anyone could…

My mom is dying. She’s 90, has dementia, can’t walk, yells angrily at times, and lives in an assisted living home, where visitors are frowned upon because of the COVID-19 threat. Several days ago, an ambulance picked her up because she had vomited and was unresponsive. Several hours after visiting…

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme “A Glimmer of Hope,” the competition is a means to “visually express the hope that exists for people affected by…

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…

Last year, I wrote about the possibility of telemedicine visits for Huntington’s patients with the Huntington’s Disease Society of America’s Center of Excellence in Chicago. My wife, Jill, and I were excited about this possibility because she has “white coat syndrome.” As someone who has witnessed Jill’s anxiety,…

I have been working from home since March and likely will continue to do so until next summer. Persephone, my first cat, has loved this. She’s always been pretty needy, mostly because of her extreme fear of missing out. Anytime my boyfriend or I shut the…

If you could go anywhere on vacation, would you take your time planning the perfect trip? Would you look at all of the travel websites in hopes of finding the most interesting places to go? Would you spend large amounts of money to see all of the typical tourist attractions?…

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…