The back-to-school season is one of my favorites. Shopping for new school clothes, finding the right backpack, and getting school supplies are part of the tradition. As my son Caeleb enters his freshman year of high school, it looks to be the start of a vastly different year. There is…

The U.S. Centers for Disease Control and Prevention (CDC) is seeking input from people who live with pain, as well as their caregivers and healthcare providers to better understand values and preferences related to pain management. This information will help the CDC update and expand the…

My husband, Jared, recently decided to stop cooking after he was injured during an epileptic seizure. It was a hard decision because he enjoys cooking, and food brings him genuine happiness. He enjoys preparing the ingredients for our daily meals. In his free time,…

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…