My youngest son wanted to play baseball. “Come on, Dad!” he pleaded. “I will wear a helmet and knee pads and anything else.” I wrestled with how to answer him. My son had a considerable complication called an inhibitor. Failure to make the correct decision might cause a horrific bleed…

Both of my sons packed and all three of us MacDonald guys were ready for what my youngest calls a “Daddy and Son Mad-capped Adventure.” My wife had an out-of-town speaking engagement, so that meant the youngest had to travel with my oldest and me. We were on our way…

With Christmas only a few weeks away, Hemophilia Association of the Philippines for Love and Service (HAPLOS) threw its annual Christmas party. It’s a modest event, but seeing people gather, spread cheer, and enjoy one another’s company is heartwarming. The party is also a time to express gratitude to…

https://www.youtube.com/watch?v=rvJGuJunOOk In this video from the Bleeding Disorders Community, Patrick Lynch from Believe Limited explains what the Teen Impact Awards are and how it highlights the great work young people with bleeding disorders are doing in their schools, homes and communities. MORE: 13 fast facts about…

I loved watching the Harry Potter movies with my sons, especially the earlier ones where Harry, Ron, and Hermione were much younger. The magic and wonder of wizards and Quidditch were fun to imagine. I especially liked Harry’s invisibility cloak. “Mom,” my son said, “wouldn’t that be cool?”…

Effectiveness in controlling bleeds and the potential for less frequent use of a treatment are two priorities people with hemophilia place on a potential gene therapy, and both ranked slightly higher than safety, a survey study of patients in the U.S. reports. The study, “Patient preferences and…

Hemophilia patients who develop inhibitors against treatment face markedly higher healthcare costs — about three times those of other patients — and experience poorer quality of life, according to a team of scientists in Italy. Alternatives are available and should be considered for these patients, they write. The study, titled…

My family is preparing to move back to New Mexico. My husband’s job as a United Methodist pastor calls us to move often, so we have the moving process down to an art form. Still, it is not an easy feat. I am always in the moving mindset. Before I…

A single dose of the experimental gene therapy Roctavian (valoctocogene roxaparvovec) prevents bleeds and the need for preventive treatment, or prophylaxis, for up to six years in men with severe hemophilia A, according to updated data from a Phase 1/2 trial. “With every year of observation in this…

Prophylactic, or preventive, treatment with Alhemo (concizumab) is associated with better quality of life and a lower treatment burden for people with hemophilia A or B without inhibitors, according to patient-reported data from a Phase 3 trial. The ongoing study, called explorer8 (NCT04082429), is investigating the…