One night when my oldest son, Julian, was 6, we sat down at the kitchen table, preparing to infuse factor VIII, a clotting agent, to treat his hemophilia. He held out his arm, and I looked at the vein we called “Old Faithful.” Located on the top of…

Before I ever met my husband, Jared, he had learned to adapt well to having severe hemophilia B and seizures. But one moment from his childhood still finds its way back to him. On the first day of fifth grade, his teacher told the class there would be a…

For much of my life in the bleeding disorders community, I’ve seen remarkable innovation happen around me. Hemophilia treatment has changed dramatically. Products have become longer acting. Prophylaxis has become more common. Gene therapy entered the conversation. Nonfactor therapies opened doors many people never imagined existed. The…

To help advance new treatments for hemophilia and other blood disorders, Pathway to Cures (P2C) has invested $250,000 in Anvesana, a company working to develop therapies based on RNA biology. “Anvesana is delighted to be working with Pathway to Cures to develop therapeutics that will bring life altering…

I am originally from Texas, so I know the meaning of the word “team.” The Lone Star State reveres sports organizations like no other place in the country. Friday nights in the fall are overwhelmed with football, marching bands, and great times to visit with friends. Everyone gathers together with…

One recent evening, my wife and I watched our favorite television shows. After the last one ended, the local news came on to give us the latest updates on the day’s top stories. One segment touched me deeply, and I couldn’t help but think back on the many health difficulties…

Raising awareness is a delicate task. Sometimes, the most effective way to promote dialogue is with a tool that is considered controversial. I understood this seven months ago when I made a T-shirt that was bound to attract both people who loved it and people who hated it.

It started with a refrigerator leaking water out of the bottom and a YouTube video that made it seem like an easy fix. You know the kind: “Just remove the freezer door.” “Melt the ice with a hair dryer.” “You’ve got this.” It didn’t seem like a big deal, but…

The extended half-life replacement therapies Eloctate and Alprolix can be used to effectively manage bleeding during surgery in people with hemophilia, according to a new study based on Phase 3 clinical trial data. These findings highlight the “efficacy and safety of these products in a broad age range of…

My sons, Julian and Caeleb, were both diagnosed with hemophilia as babies. Although they’re 10 years apart, each diagnosis was overwhelming and affected my wife, Cazandra, and me differently. I remember feeling helpless, not knowing anyone who had the slightest idea how to manage a bleeding disorder. For the…