I have long admired the world-renowned ballerina Michaela DePrince. Like many others, I was captivated by her inspiring journey from being a war orphan in Sierra Leone to her rise as a star on the global dance stage. Tragically, DePrince recently died at the young age of 29, just one…

This year’s annual Bleeding Disorders Conference began a week ago in Atlanta and ended on Saturday. While it wasn’t my first such event, it brought several new opportunities. For one thing, as my wife, Cazandra, and I packed for the event, I felt mixed emotions. At recent conferences,…

I was honored to speak with my husband last week at the National Bleeding Disorders Foundation‘s annual Bleeding Disorders Conference, held this year in Atlanta. It was a memorable experience to share our story with fellow community members. While I’ve spoken at conferences nationwide for many years,…

Lately, I’ve been feeling burned out in my day job as a virtual assistant. While it helps pay the bills, the tasks are sometimes repetitive, and I often long for something that keeps me motivated for longer. Sustaining motivation is a constant challenge for me, as I’m diagnosed with attention-deficit/hyperactivity…

At 32, Ashley Zebley from Arkansas is no stranger to bleeding disorders. I recently interviewed her over the phone. Ashley explained that her father has severe hemophilia B, and both her maternal grandmother and great-grandmother exhibited bleeding problems, although neither was diagnosed with hemophilia. Ashley herself is a…

As a mom and piercing enthusiast, I’ve always looked forward to the day my daughter, Cittie, would want her ears repierced. They were pierced when she was a baby, but her curiosity back then led her to constantly play with her earrings, which caused an infection. Her father and my…

MGX-001, a gene-editing therapy being developed by Metagenomi for hemophilia A, has shown promising safety and durability in an ongoing preclinical study in three nonhuman primates, the company has announced. Results showed that after one year, two animals had normal (82%) or nearly normal activity levels (41%) of…

I must admit that, as a father, I dreamed of greatness for my sons. While Cazandra, my wife, was pregnant with each of my boys, I envisioned a global career for them that would transform the world. With my measurement of success as a guiding light, I imagined the…

A team of U.S. researchers has developed a new gene-editing strategy that could make the approach safer and more efficient for treating certain diseases, such as hemophilia. In preclinical studies, the gene-editing technique was shown to enable fast and efficient delivery of healthy genetic material to cells, while bypassing…

My primary care provider recently retired and was replaced by a doctor new to my area. As I prepared for our first meeting, I reflected on how I usually approach my bleeding disorders. Typically, I don’t even mention hemophilia to a primary care doctor. I mutter terms like “bleeding…