In my home these days, hemophilia is like a family member who stops by for a fleeting visit — just long enough to say hello and give a quick hug, but not long enough for a cup of coffee. I hadn’t dared to dream that this situation would…

One of my favorite programs is CBS “Sunday Morning,” which my husband and I record and watch on Sunday afternoons. One of its recent stories brought me to tears. At Glen Lake Elementary in Hopkins, Minnesota, several students have physical disabilities. The children in Betsy Julien’s fifth grade class…

A voice memo appeared in a text from one of my hemophilia mom friends. We usually see each other at national meetings or on social media, but we don’t talk much outside of that. She’s one of the coolest women I know, so I always wonder why we don’t…

Part two in a series. Read part one.  My family was taught many lessons in the year that everything appeared to fall apart and hemophilia became a nightmare in our lives. The most significant lesson was to cherish every moment. Sometimes in life’s most significant challenges,…

Editor’s note: After this column was written, Jared and his wife welcomed a healthy baby girl, Melanie Citrine, on Jan. 18. Congratulations! My wife is 38 weeks pregnant. I’ll soon be a father. That fact is becoming more real to me every day. I have many questions: Will I be…

Lately, I’ve been toying with the idea of starting a social media channel that captures slices of my everyday life. On the surface, that might not sound unusual. Plenty of people create online spaces to document what they love, what frustrates them, or what they’ve learned. But for me, the…

This Father’s Day, as we celebrate the role of fathers in our lives, I can think of no one more deserving of recognition in our bleeding disorders community than Iván Girón. At Genentech’s Rare Blood Disease Summit in San Francisco last year, I was immediately drawn to Iván…

SerpinPC, an experimental treatment being developed by Centessa Therapeutics, continues to be safe when used for up to nearly three years and to almost zero out the number of bleeds in adults with severe hemophilia A or B. Those findings come from a one-year extension of the…

Friday is a big day. My husband and I will take Caeleb to the Hemophilia Treatment Center for bloodwork. If all looks well, we may discuss removing his port-a-cath. Not replaced. Removed. It’s not that his veins are fantastic, but Hemlibra (emicizumab-kxwh) is doing what it is supposed…

Summer vacation flies by so quickly! We start preparing for the new school year by shopping for new clothes, school supplies, and shoes. However, prepping for school when your child has a bleeding disorder adds another aspect of preparedness to shoot for. Additional educational support for sports, childcare, or…