I am convinced that many of us live for “aha” moments. I’m referring to those times when an unexpected realization occurs that either confirms or changes the course of one’s life. These moments are often welcome guests, but sometimes they rage like a fierce hurricane, and the best we…
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I’m a 25-year-old “PWD” (person with disabilities), and I’m not a baby bird anymore. It’s time for me to fly on my own, be independent, and take care of myself. Recently, I had a string of bleeding episodes. It was difficult for me to put a smile on my face.
My youngest son, Caeleb, is completing his junior year of high school. He’s excited about his senior year and his plans for getting in shape. But there’s something else he’s even more enthusiastic about. Caeleb is beginning to think about life after high school. It may seem late for…
Switching from standard half-life factor replacement therapies to the extended half-life treatment Elocta (efmoroctocog alfa) improves bleed control among people with hemophilia A. That’s according to an analysis of data from the real-world A-SURE study (NCT02976753), which showed that switching to Elocta, sold as Eloctate in the…
Inspired to sponsor a national conference for women with hemophilia types A and B, The Hemophilia Foundation of Michigan (HFM) became a game changer last November when it hosted an event called “Being Visible.” Gathering 103 women representing 32 states, the event featured physicians…
Caeleb MacDonald shares how hemophilia has shaped his approach to exercise, from understanding physical limits to finding ways to stay active through biking.
My husband, Jared, and I are two weeks into our self-sufficiency journey. Just last week, our family moved into a rented condo. We spent some time and money to fix up the place and repair damages. So far, Jared’s handyman skills have improved a great deal. He likes that…
Adults with moderate-to-severe hemophilia engage in less physical activity and have reduced physical fitness relative to healthy adults, according to a recent study. Data also indicated these patients had more indicators of abdominal fat accumulation and more often had high blood pressure than healthy people, which could overall reflect…
When you look at me, you’ll see a quirky, colorful, loud, and active person, yet at the same time, I am reserved. I am of average height and weight, and am known as a hiker, a cyclist, and (for very short stints) a beach jogger. I smile a…
CB 2679d-GT, an investigational gene therapy for hemophilia B being developed by Catalyst Biosciences, can increase factor IX (FIX) levels and significantly reduce bleeding, early studies show. The data, “Combination of a Novel Chimeric AAV Capsid and Potency Enhanced FIX Variant for Hemophilia B…