When our oldest son, Julian, was about 6 years old, the hemophilia treatment center (HTC) in Houston invited my wife, Cazandra, and me to participate in a program that changed our lives. It was called Parents Empowering Parents, better known as PEP in the bleeding disorders community. Created by social…

I meet a friend at noon at my home in rural northern California. We hop into my car and drive two hours north to Brookings, a coastal town just across the border in Oregon. Driving around town, I search for a quiet parking lot with good phone reception. Using a…

Metagenomi is now working on preclinical studies to advance MGX-001, its experimental gene-editing therapy for hemophilia A, with the goal of bringing the treatment candidate into clinical trials in 2026. As part of a corporate update also noting 2024 progress, Metagenomi announced that, this year, it will be…

My husband, Jared, often spent his childhood navigating two very different worlds. In one, he was a regular kid with big dreams and boundless imagination. In the other, he was a young boy living with severe hemophilia B, which meant being confined to hospital beds for weeks while receiving…

I’m a pastor in the United Methodist Church, where the one constant we share is change. In our denomination, pastors serve on an itinerant system, which means that the cabinet (the bishop plus the district superintendents) chooses which pastors will serve in different locations. As a result, I’ll…

Prophylactic, or preventive, treatment with factor VIII (FVIII) replacement therapy for four years reduced annual bleeding rates by 91% for people with severe hemophilia A, a study from Taiwan reported. After switching from on-demand treatment to prophylaxis, patients also experienced a 90.8% reduction in annual joint bleed rates and reported…

When my husband, Jared, was younger, he was “the sick child.” With severe hemophilia B and a seizure disorder, he stood out like a sore thumb — or a rare gem. In any case, he was distinct as the child who required special accommodations at school or who missed…

On Monday, my youngest son, Caeleb, will begin his second semester as a freshman at the University of New Mexico. Last night he asked me if I had a few minutes to talk. I might not be the sharpest tool in the shed, but when my 18-year-old asks outright for…

Combining gene therapy with minimally invasive, robot-assisted hip replacement surgery safely and effectively treated severe joint damage for a 27-year-old man in China with hemophilia A, according to a case report. The approach significantly reduced the need for replacement therapy…

My husband, Jared, lives with severe hemophilia B and a seizure disorder. Despite these challenges, he’s active in ways that many people wouldn’t expect. He swims, lifts weights, and plays badminton. He can also keep up with our 5-year-old daughter, who is a huge ball of energy. We recently…