During the four weeks leading up to Christmas, many in the Christian tradition observe a season of waiting called Advent. This period of anticipation encourages us to take a fearless and moral inventory of our lives so we can invite the birth of Christ into our hearts properly. We…

My youngest son, Caeleb, is a sophomore in high school. He lives with severe hemophilia A, along with the complication of antibodies that inhibit the infused factor’s ability to stop bleeding episodes, and chronic pain is proving to be a significant issue for him. Caeleb’s right knee and ankle…

Monthly treatment with the investigational medication fitusiran can reduce bleeding in people with hemophilia A and B, with or without inhibitors, according to data from two Phase 3 clinical trials. “We are encouraged by the data from these initial Phase 3 studies demonstrating fitusiran’s potential as a new…

Many young people enter adulthood with dreams and goals in mind. The burning desire to attain these goals drives them to carry on through hardships and challenges. But for people with chronic illness, achieving goals can be harder, as they may face more obstacles related to their condition. It may…

Getting diagnosed with a bleeding disorder can be difficult. I am somewhat fortunate. At age 10 in 1975, I was diagnosed with multiple bleeding disorders. But that doesn’t mean I didn’t have bumps and challenges along the way. Testing, treatment, and classification of bleeding disorders have changed dramatically since…

After 18 months, the investigational gene therapy AMT-061 (etranacogene dezaparvovec) continued to prevent bleeds in men with moderate-to-severe hemophilia B, according to top-line data from the Phase 3 HOPE-B clinical trial. The trial has met its pre-specified primary goal, with control of all bleeds by 18 months not…

As a pastor, I often greet parishioners at the church door. I want to share meaningful words of assurance, but unfortunately, I must move from one person to the next in a quick, almost rapid-fire progression to avoid holding up the line. In-depth conversations, which I dearly love, must wait…

Winter is one of my favorite seasons. I enjoy the crispness in the air and wearing sweatshirts and warm, fuzzy socks by the fireplace. My son Caeleb enjoys the same things about winter, but his hemophilia and chronic pain complicate his relationship with the season. The morning is the most…

BioMatrix Specialty Pharmacy has announced this year’s winners of its memorial scholarship program, designed to help people with hemophilia and other bleeding disorders pursue higher education. Six scholarships, each worth $1,000 and honoring people who made “unique” contributions to the bleeding disorder community during their life, are awarded…

“Money can buy happiness.” My younger self would have refused to buy into that idea. I would have retorted with a long list of nonmaterial things that gave me pleasure. After all, Jessie J sang in her 2011 hit song “Price Tag” that, “It’s not about the money,…