Columns

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…

We were settling down in the living room to relax after putting our daughter to bed for the night. I was sitting on the leather sofa with my legs curled up next to me. The setting sun was shining through the front windows, casting a warm glow across a wall…

The Huntington’s Disease Society of America held its annual conference in early June. Like many events these days, it was virtual, which made it super convenient to attend. I watched several sessions, including “Preparing for the Change That Will Come” and “Support Group for Caregivers.” I like to have a…

To this day, I have only talked to two younger people with Huntington’s who weren’t related to me. I know some resources could help me connect to others (like the HD Young Adult Conference), but I haven’t decided if I want to…

On May 21, 1992, MTV aired the first episode of “The Real World.” The introduction to the show went like this: “This is the true story of seven strangers picked to live in a house, work together, and have their lives taped. Find out what happens when people stop…

I have pink eye. Again. And I’m extremely happy I got it. I’ll get to why in a moment, but first some background. For the third time since March, the whites of my eyes are red and watery with occasional discharges that result in some crusting on my eyelashes.

If you’ve ever experienced an allergic reaction to something, you probably understand why the root word of misery comes from the Latin word “miseria,” which means wretchedness. My dog has been in a state of misery for the past two weeks due to an allergic reaction. We don’t know…

Working remotely, while slightly draining, has had its benefits. Being able to sleep in until the last possible second (and maybe sometimes slightly past that) and my ability to work anywhere are among them. That latter perk means I’ve been able to work from my parents’…

My husband and I were driving along a country road with no destination in mind. We needed to escape the city and our lives for the day. We drove past fields of tall, golden grass waving in the breeze, and turned down random roads that we happened upon. We cracked…