A single dose of the investigational gene therapy FLT180a can lead to clinically meaningful, sustained increases in the activity of factor IX (FIX), effectively preventing bleeds and the need for replacement therapies in people with severe hemophilia B, a Phase 1/2 clinical trial shows. These results support the…

Parenthood has transformed my husband, Jared, and me in many ways. We’ve had to be responsible for a lot of things. We must look after our daughter, Cittie, as well as our home, our health, and our relationships with each other and other people. When I was younger, I used…

Hemophilia A patients age 12 and older who live in Canada now may receive prophylactic (preventive) treatment with Bayer’s antihemophilic factor Jivi. Health Canada approved Jivi as a treatment to prevent or reduce the frequency of bleeding episodes in patients age 12 or older who have received…

Many times, I find myself overwhelmed by the weight of my responsibilities, particularly when it comes to managing issues related to my sons’ hemophilia. The stress from different directions can be paralyzing, and I often grapple with anxiety about how to handle everything at once. The burden…

I’ve never met a parent who enjoys the school drop-off. It’s frustrating when someone doesn’t follow protocol and stops without moving their vehicle to the front of the drop-off zone, thereby forcing everyone behind them to wait. And in my experience, the line forms at least half an hour before…

In the past month, it has been hard for me to focus on hemophilia advocacy efforts, which normally are a burning passion. Disappointment over an opportunity to work more deeply with the hemophilia community that didn’t pan out and COVID-19 realities have me pulling back.

I’ve been cleaning up my computer files and finding pictures everywhere except where they are supposed to be stored. One photograph caught me by surprise. My mighty warrior, Caeleb, went to a monster truck rally in 2014. He took a great picture with the driver of the monster…

The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to Baudax Bio’s investigational regulatory T-cell therapy TI-168 for the treatment of hemophilia A with inhibitors. Orphan drug status is given to therapies intended to treat rare conditions, defined as those affecting less than 200,000 people in…

Researchers at the Mayo Clinic Arizona have reported a third rare case of hemophilic pseudotumor (HP) identified in a non-hemophiliac patient. Findings from the investigation, “Hemophilic pseudotumor in a non-hemophilic patient treated with a hybrid procedure of preoperative embolization of the feeding arteries followed by surgical resection—A…

Before I became a parent, I never imagined I’d be finding veins and accessing ports. But after my sons were born with severe hemophilia A with inhibitors, my husband and I quickly learned the basics of caregiving, by God’s grace. Over the years, people have said, “Cazandra,…