After worship on Sunday, the church I serve as pastor has a fellowship hour, when everyone comes together, enjoys coffee and snacks, and visits with one another. It’s a beautiful time and a great way to start the week. Snacks and goodies are a treat — and then there’s the…

Most people with severe hemophilia A who were given once-weekly treatment with efanesoctocog alfa in the Phase 3 XTEND-1 trial were bleed-free over a year on treatment. The therapy also improved joint and overall physical health and eased pain intensity in the participants compared with previous treatments. Results…

Given all the mass shootings, economic uncertainty, and contentious political discourse happening in the United States right now, it’s easy to see that our country is in a state of chaos. Yet, I continue to draw hope from the words of Maya Angelou: “When you know better, do…

One of my favorite programs is CBS “Sunday Morning,” which my husband and I record and watch on Sunday afternoons. One of its recent stories brought me to tears. At Glen Lake Elementary in Hopkins, Minnesota, several students have physical disabilities. The children in Betsy Julien’s fifth grade class…

An investigational factor VIIa (FVIIa) therapy called GEN-0828 may be able to minimize blood loss and accelerate blood clotting at lower doses than NovoSeven, an approved medication used to control bleeding in hemophilia patients, according to a study in a mouse model of hemophilia B. Still, both treatments…

The World Federation of Hemophilia (WFH) has launched a registry to monitor long-term outcomes of safety and effectiveness for people with hemophilia who receive gene therapy treatment. The aim of the WFH Gene Therapy Registry (GTR) is to collect data for all patients who have gene therapy, whether through…

In the early days of a diagnosis, emotions run wild. Anxiety, helplessness, and anger are a few feelings that cloud the mind, and it’s difficult to even begin to understand what lies ahead. In 1996, my first son, Julian, was born and diagnosed with severe hemophilia A. In…

My husband and I have always found ourselves living in between places. The first apartment we moved to was in a hub between three cities. Now we live on the border between two cities. Just a few streets away from us is a sign that says, “Thank…

Last year, I met Kayla Mack through a Facebook group for people with von Willebrand disease (VWD). Kayla has type 3, a severe form of the condition. She reached out to the group for help after a terrifying visit to the emergency room. She wrote, “I’m getting very afraid…

Three years after receiving the one-time gene therapy Roctavian (valoctocogene roxaparvovec) at trial, the majority of men with severe hemophilia A in the Phase 3 GENEr8-1 study were off standard replacement therapies and did not experience any bleeds requiring treatment. That’s according to new data announced in a…