“Be prepared.” Scouts around the world have this motto ingrained in their hearts. While I was a Girl Scout for only a short time, this practice remains essential to me. I look ahead and consider the numerous ways a situation may manifest. As the mother of two sons with…

A gene therapy designed to provide hemophilia A patients with a highly functional version of factor VIII (FVIII), the blood clotting protein they lack, could offer more sustained bleed control than existing gene therapies, preclinical research suggests. The current approach in hemophilia A gene therapy is to provide a…

For those of us living with bleeding disorders, a critical question often looms large: In the event of an emergency, if we rush to the emergency room (ER), will the hospital administer our own factor treatment or will we be forced to use theirs? On the surface, it…

I live in the high desert of New Mexico, where we have over 300 days of sunshine each year. It’s a perfect place to hike, bike, climb, and run. The beauty of this place is undeniable. Yet despite all its splendor, I often find myself yearning for the storms.

For many millennial families, the dining table has become somewhat of a relic. What was once a central feature of family life — where meals were shared, stories told, and connections made — is now increasingly overlooked. It’s a trend I’ve seen in many homes, including my own,…

Prescriptions for extended half-life products to hemophilia A patients in Japan increased from 2016 to 2020, according to a new study that analyzed real-world data from a hospital database. This was accompanied by an increase in healthcare costs seen for patients switching from standard half-life factor replacement therapies to…

My son Caeleb recently started college. He’s enjoyed the beginning of school and appreciates the flexibility of his schedule, but there’s one problem: his mobility. Caeleb lives with severe hemophilia A with an inhibitor. Persistent bleeding into his right knee and ankle resulted in irreparable damage and…

More than 1 in 10 men with hemophilia reported being restricted in their sexual functioning, which, in turn, had a negative impact on their quality of life, per data from a new survey-based study conducted in the Netherlands. The study also found that this…

Through my journey of being an advocate for two sons with hemophilia, I’ve continued to learn life lessons that enrich my soul and make me a better person. While it’s true that raising Julian and Caeleb involved the heavy burden of managing their bleeding disorders, I’ve discovered…

My husband, Jared, enjoys cooking. As I write this, a pot of gumbo simmers on the stove. Its strong aroma drifts throughout our open-layout house and toward my work desk. My stomach churns in excitement. It’s his first time making this dish, but as with nearly every recipe…