From early on, we find success by developing a strong work ethic. Some of us come by it naturally, while others learn the value of working hard and doing the best job they can do. I realized that discipline brought great rewards, both musically and academically. When I failed to…

My 18-year-old son, Caeleb, is an artist. When he starts talking about colors, a lengthy conversation will ensue. Now in college majoring in digital arts, he’s passionate about his field, and his love of color runs deep. Art has been a saving grace for Caeleb, who lives with severe…

My husband, Jared, has had hemophilia since he was born. He has known no other life than one with a bleeding disorder. And that is why he does not consider hemophilia to be his “worst enemy.” Instead, he considers epilepsy his greatest foe.

The past three weeks have been busy ones in the life of my church family. Since the middle of last month, I’ve performed four funerals and a wedding and led a critical church conference. These events have had emotional consequences. My anxiety level continues to be high as I navigate…

Dust off those backpacks, girls, it’s time for the school year to begin! When your daughter has hemophilia or another type of bleeding disorder, sending her to school can be overwhelming. But we’ve come a long way since my school days. Children today are fortunate to have access to…

The effectiveness of liver-directed, viral-based gene transfer — the most used experimental gene therapy approach for hemophilia A — is significantly reduced in mouse models of hemophilia A relative to healthy mice, a study shows. This limitation was associated with a pronounced reduction in fenestrations — cell surface…

Gene therapy delivered by microbubbles shows promise in treating hemophilia B, a hereditary bleeding disorder caused by the lack of blood clotting factor IX, new research suggests. The study, “Ultrasound-targeted hepatic delivery of factor IX in hemophiliac mice,” appeared in the journal Gene Therapy. Hemophilia B affects approximately…

I’ve been dating for nearly 40 years, and consider myself somewhat of an expert. Valentine’s Day feels like the perfect opportunity to impart my experience and wisdom. One thing is certain: Dating with hemophilia and von Willebrand disease is like a box of chocolates — you never know…

Preventive treatment with Hemlibra (emicizumab) was not considered cost-effective at its current price compared with standard replacement therapies in adults with mild or moderate hemophilia A without inhibitors, according to a modeling study. The cost of Hemlibra would need to drop by at least 35% to become cost-effective…

Hemlibra (emicizumab), the sole approved prophylactic treatment for hemophilia A, is now available to patients in developing countries via the World Federation of Hemophilia (WFH) Humanitarian Aid Program after Roche and its subsidiaries Chugai and Genentech joined the program. The donation will provide access to Hemlibra for…