I look into my son’s eyes and see beauty. I see the vibrant green, which fades into a blue that rivals the sky. Down in the lower left part is a spot of brown that never changes. His eyes give us a reflection of his soul. Though change is all…

Dear Friend, We live in a world where people want to help each other. I know you mean well, but there are a few things I need you to understand. When I tell you that my son is having a bleed and is in pain, don’t feel sorry for me.

Oct. 7, 2019, came and went like any other day. Our family went about our business: my son went to school, and I sat at my desk, planning my next sermon. But the day was special. It was the birthday of my wife, Cazandra, and it might have gone unnoticed…

I’m starting to recover from my recent iliopsoas bleed. I’m irritated that my right hip isn’t as flexible as it used to be, but that’s a normal part of recovery. It’ll take me a while to regain the ability to move freely and easily. I’m looking forward to the…

Organizations such as the Hemophilia Federation of America and the National Hemophilia Foundation provide the bleeding disorder community with a wide array of resources, support, and platforms to connect with others. The National Hemophilia Foundation held its annual meeting recently, and I watched as friends in the…

My daughter, Cittie, is now 8 months old. She has obvious likes and dislikes and is starting to develop habits and character traits. I can sense that she’s about to become a full-fledged toddler. Cittie hasn’t learned to express herself verbally. My husband and I still rely on behavioral clues…

A preventive treatment for hemophilia B called dalcinonacog alfa (DalcA) led to an increase of more than 12% in the levels of factor IX in two patients with severe disease treated in a Phase 2 trial, reaching the study’s main goal. Researchers also found no immune reaction against the therapy. Enrollment is…

Years ago, I watched my youngest son, “MacDonald the Younger,” as he struggled with recurring joint bleeds. Each episode took more of his mobility away. He could not extend his leg beyond 45 degrees because his knee was so full of blood, and he used a wheelchair for at least…

Last year was difficult for my mighty warrior Caeleb. Moving to a new school in a town where everyone knows everyone is not something you wish for as an incoming seventh-grader. This year was better until I discovered that a couple of boys were bullying Caeleb and he did not…

The gene therapies AMT-060 and AMT-061 both restored coagulation factor IX levels in a primate model of hemophilia B, but AMT-061 resulted in greater coagulation activity at the same dose, a new study reports. The study, “Enhanced Factor IX Activity Following Administration of AAV5-R338L “Padua” Factor IX…