To the father of my daughter, Thank you for being present from the very beginning of my pregnancy — when those two lines first appeared, and you told me you didn’t know how to feel (despite us having planned everything out). Thank you for soldiering through those…
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I knew that I wanted to teach theology at the university level. I prepared a great résumé and felt academically equipped, having received my doctorate in ministry. I applied to dozens of schools, but no one offered to hire me. I questioned my abilities and couldn’t understand why I…
Three U.S. bleeding disorder patient organizations recently received funding support for their patients’ rights advocacy campaigns. The Milwaukee, Wisconsin, headquartered Great Lakes Hemophilia Foundation (GLHF), the New York City Hemophilia Chapter (NYCHC), and the Columbus, Ohio-based Ohio Bleeding Disorders Council (OBDC) have been…
Elevated levels of the immune signaling protein BAFF were found in the bloodstream of boys who developed neutralizing antibodies against FVIII replacement therapy, a standard treatment in hemophilia A, a study reported for the first time. Changes in the gene that encodes the BAFF protein, involved in the growth…
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…
We Struggle and We Move On
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…
Invisibility Is Not the Easy Way
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…