At this time of the year, I like to clean. Not just dusting and mopping, but also purging my home of unnecessary items. Unworn clothes, worn-out shoes, and overwhelming stacks of papers and magazines. The other important area that needs a thorough inventory is my home medical supply…
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This month, we celebrated the two holidays of Easter and Passover. Many of my Christian friends describe Easter as a celebration of freedom over sin and death due to the resurrection of Jesus Christ. My Jewish friends gather to recount the story of Passover, a celebration of freedom from slavery…
AMT-060, a first-generation gene therapy candidate by uniQure, continues to safely reduce the number of bleeding episodes and the use of clotting factor IX (FIX) in men with moderate to severe hemophilia B, long-term data from a Phase 1/2 clinical trial show. The therapy also prevented…
The song “The Daring Young Man on the Flying Trapeze,” lyrics by George Leybourne and music by Gaston Lyle, plays loudly in my mind. As a child, I loved the lines “He’d fly through the air with the greatest of ease/ That daring young man on the flying…
Aging can affect mobility and lead to a series of complications for people with hemophilia, including increasing the risk of joint bleeds and irreversible joint damage. Regular exercise and physical therapy can be an important part of maintaining your strength, protecting your joints, and managing hemophilia’s impact on…
My grandmother always said, “If you don’t have anything good to say, don’t say anything at all.” She lived by those words, and in all of my memories, I can’t recall her ever speaking ill of anyone. Last week I found myself with nothing good to say, which left my…
In the early days of a diagnosis, emotions run wild. Anxiety, helplessness, and anger are a few feelings that cloud the mind, and it’s difficult to even begin to understand what lies ahead. In 1996, my first son, Julian, was born and diagnosed with severe hemophilia A. In…
Healthcare costs can be 25 times higher for hemophilia B patients than for individuals who do not have a bleeding disorder, according to a recent study. These findings reflect both direct costs of hemophilia treatment and a greater need for other healthcare resources, researchers noted. The study, “…
A Phase 4 trial investigating Ixinity as a prophylactic treatment for children under age 12 with hemophilia B has reached the halfway mark for its enrollment target, Medexus Pharmaceuticals announced. The international study (NCT03855280), taking place at sites in Brazil, Colombia, Moldova, South Africa, and Ukraine, continues recruiting eligible…
My happy place is in front of an audience. It’s where I feel most comfortable. As I’m a self-proclaimed introvert, that may sound odd. Yet I’ve had numerous opportunities to answer my call to speak. It’s not about accolades and praise; it’s about the message. Regardless of the size of…