Dimension Therapeutics recently revealed positive preclinical results from a novel adeno-associated virus (AAV) that delivers Factor VIII as a therapeutic approach for hemophilia A patients. The results were presented in a poster, titled “Optimized AAV-Mediated Human Factor VIII Gene Therapy in Hemophilia A Mice and Cynomolgus Macaques” at the 19th American Society of…

Last year was a year of conferences for me — at least 10 by my count. It still amazes me that, in the hemophilia community, thousands of individuals and families are able to travel and attend these events at little or no cost, thanks to the support of event…

I often tell people that my mind is a dangerous neighborhood and that I should never venture into it alone. This usually gets a laugh, which the comic in me appreciates, as I often say it to lighten a difficult conversation. A little release of tension doesn’t hurt anyone. But…

When people learn that their loved one has hemophilia, they often jump straight to a mental checklist of risks: bleeding, injuries, factor, emergency plans. Safety becomes the headline. Over time, it can become the lens through which every choice is evaluated. But for many people…

I love making quilts. Some people wonder why anyone would buy new fabric just to cut it up and sew it back together. It might sound odd, but for quilters like me, creating something by hand brings comfort, joy, and satisfaction. There is a rule when preparing to make…

The first of my four alarms sounds at 6 a.m. Groggy, I roll over to turn it off, knowing I have 15 minutes until the next one goes off. I am a night owl and often let time slip away, crawling into bed after midnight. The next morning, I pay…

The start of a new year often brings talk of ambitious goals, including growth, progress, and milestones we hope to achieve by year’s end. My husband, Jared, and I have those goals. In fact, we’re approaching 2026 with a specific list of things we want to build, maintain, and improve…

In a previous column, I shared Tara Blakely’s journey to earning a black belt — an accomplishment nearly 30 years in the making, interrupted by life, motherhood, undiagnosed hemophilia, and everything in between. Impressive, certainly. I was equally impressed by her 110-pound weight loss. I’ve struggled with my…

Planning for what happens after I die is such an uncomfortable topic that I want to run and hide. Somehow, just thinking about death makes it feel more real, even though I should have years of life left. Yet, I know that hemophilia A makes my life more fragile.

Living in the Philippines has shown me how differently people understand illness depending on where and when they grew up. In many rural provinces, even something as common as high blood pressure gets mismanaged. Doctors may not have specialized training. Medical equipment is scarce. And reliable health education often depends…