Last night, I had very little left in the tank. The past few weeks have brought unique challenges and responsibilities that left me weary. As I started thinking about my column for this week, I realized how much time I’ve spent writing about when my children were small. But what…

I met Jennifer Hastie last year at the Hemophilia Federation of America’s Mild Matters Summit in Tulsa, Oklahoma. Along with two of her three daughters, Jennifer has von Willebrand disease (VWD) type 2B, a rare variant. We share more than just a name: Jennifer is also 58…

I made it to the Manila Pen Show here in the Philippines, and I couldn’t be happier! There’s something deeply satisfying about being in a space filled with fellow enthusiasts, surrounded by exquisite writing instruments and vibrant bottles of ink. For me, collecting fountain pens is more than just a…

When my youngest son was 4, he wanted to play baseball. My nerves were shaky as I took him to register for the fall season. I hoped he would enjoy playing the sport. When the first game of the season rolled around, my wife and I sat in the bleachers,…

My husband, Jared, has fond memories of his school days when he was younger. He went to an all-boys combined elementary school and high school, where roughhousing and horsing around with friends were common. He and his classmates sometimes were crude and rowdy, he says, but they were all very…

I’m sitting at my desk at work, focusing on projects I must accomplish before the day ends, when suddenly my ringtone fills the room with the song “Defying Gravity” from the Broadway musical “Wicked.” I see that my oldest son, Julian, is calling me. I smile when I…

I recently celebrated my 27th birthday in the company of family. Despite being unable to go out due to government-mandated COVID-19 restrictions, I still had a wonderful celebration at home. Although it was a weekday, our workload that day wasn’t too heavy or stressful. I was able to do enjoyable…

A few years ago, my family and I attended an inhibitor symposium in San Francisco. While the conference was jam-packed with incredible information, we did have a little free time to explore the city. Fisherman’s Wharf had great food and beautiful views of the harbor. We stood on a…

Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or so Americans with rare diseases and ensuring timely, affordable access to lifesaving treatments, the nation’s highest-ranking health official said. “We have to think about how our financing system can protect those with serious and rare illnesses.

Having a family member admitted to the hospital throws the entire family’s routine into absolute chaos. We lose our control of time, as well as our privacy. While it is great to see a friend or to hear good news from the medical staff, we are unable to dictate…