Scientists successfully combined the gene-editing tool CRISPR-Cas9 and a special type of virus to deliver corrected genes to restore the function of the coagulation factor IX (FIX) gene in young mice with hemophilia B. The study, “Long-term correction of hemophilia B using adenoviral delivery of CRISPR/Cas9,”…
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Living with hemophilia and epilepsy has shaped much of my husband’s life — but fatherhood transformed it. Before our daughter was born, Jared, my husband, already carried the weight of two chronic conditions. He’d long made peace with a life of calculated risks, limited physical activity, and the unpredictability…
Part three in a series. Read parts one and two. With the invention of the map created by my son’s medical team, my wife, and me, the most challenging year that we ever experienced ended. My son did not have another absence while in elementary school due…
“Don’t let anyone cut into you without talking to your hematologist first.” That’s what my hematologist told me decades ago, and I’ve never forgotten it. It’s advice that may have saved my life more than once. For people living with hemophilia, von Willebrand disease, or rare factor…
Organizations such as the Hemophilia Federation of America and the National Hemophilia Foundation provide the bleeding disorder community with a wide array of resources, support, and platforms to connect with others. The National Hemophilia Foundation held its annual meeting recently, and I watched as friends in the…
During the December holiday season, while visiting family in Illinois and Wisconsin, I had an unexpected dental emergency: A crown cracked and fell out. Unfortunately, complications arose when I contracted COVID-19, causing delays in addressing the issue. When I finally managed to schedule an appointment for the crown…
Note: All four U.S.-based columnists for Hemophilia News Today collaborated on this column. While readers may see individual columns on these issues in the days to come, these writers felt it was important to share their collective voice to highlight the impact of recent changes at the U.S. Centers for…
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Caring for Adult Children
“MacDonald the Older” and I drove down the road that leads to his college. We stopped at a local restaurant, had a good meal, and then attended a concert together. I look forward to times like these when I get to share some laughs with my adult son.
Game shows have experienced a resurgence in recent years, captivating audiences with their blend of entertainment, competition, and nostalgia. I’ve always liked game shows, especially those involving trivia. In “Who Wants to Be a Millionaire?,” contestants answer multiple-choice questions; if they’re correct, they advance to the next level, with…