A couple friends came over for lunch last weekend, and one started talking to my youngest son, Caeleb, who is 14. Caeleb and I were both confused by this, because the conversation didn’t make sense. I realized that my friend had mistaken Caeleb for my older son Julian, who is…

Monsoon season has begun here in the Philippines. Every time I drive in downtown Manila, I’m reminded of a family trip last year to Tagaytay, a popular tourist destination. My husband, Jared, and I wanted to get out of town for our first anniversary, but the trip turned out…

As we continue to practice social distancing, I find it exceedingly difficult to stay connected to brothers and sisters in the hemophilia community. I gain strength and hope from dear friends who struggle with medical issues like mine. Why then do I find it hard to take advantage of…

When people find out my sons have hemophilia, their reactions often make me uncomfortable. “You are so brave, Cazandra,” one might say. “I don’t know if I could do it,” another might add. Friends and family members often place me on a pedestal by saying that my strength and courage…

Novalis Biotechnology is supporting a €1.4 million ($1.64 million) investment in Enzyre to finalize the development of a handheld diagnostic device to monitor blood coagulation status in people with hemophilia, and to secure regulatory approval. The funding comes as a Corona Bridge Loan, granted by the…

A single dose of the investigational gene therapy BAY 2599023 safely promotes a sustained production of factor VIII (FVIII),  effectively preventing spontaneous bleeds in people with severe hemophilia A, a Phase 1/2 trial shows. Two of the six patients treated to date in this clinical study, both given the…

I am the first person to insist that a diagnosis does not define my children. In my home, we never call our children hemophiliacs, rather we focus on the fact that they are human beings who have hemophilia. I never want my sons to think that their whole person is…

School is about to start — at least that’s the plan as of this week. With such havoc in our world, plans for students to return to school are ever-changing. My 14-year-old son, Caeleb, will enter high school this fall. His school has a plan for three groups of…

Last week I hit a significant personal milestone. In order to keep myself mobile and healthy, I ride a recumbent indoor bike — a lot! I used to ride over 100 miles a week. Riding my bike has kept me and my joints healthy. It’s also helped…

A single infusion of valoctocogene roxaparvovec, BioMarin Pharmaceutical’s investigational gene therapy, can lead to the sustained production of factor VIII (FVIII) in people with hemophilia A, according to a biopsy study that showed the presence of the treatment’s gene constructs in the liver over nearly four…