It was a celebratory day for the Philippines on July 26 when female powerlifter Hidilyn Diaz won gold at the Tokyo Olympics. It was her country’s first ever Olympic gold medal. I feel proud as a Filipino that our country has earned such a high honor. But for more…

Many years ago, when hemophilia came into my family’s life, rearing its ugly head like a lion ready to devour its prey, we held on to anything we could. As the chaos of chronic illness overtook our lives, my wife and I made plans to help our children manage their…

As a parent, it is my responsibility to help my sons become productive, compassionate, caring individuals. My oldest son, Julian, is 25 and working to complete his college degree. He is on the cusp of transitioning to a new phase in life. In less than a year, he will…

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…

I recently came across an NBC News Think essay about the oft-overlooked privilege of being able to focus on one’s studies while in college. It reminded me of how my parents supported me through my own college years, and how I failed to fully appreciate how fortunate I was…

In the Netherlands, children and adults with hemophilia participate in sports as much or more than people from the general population, according to a study. The findings also indicated that disease severity affected sports participation only in adults, and that children with hemophilia were more willing to participate in…

A single dose of Spark Therapeutics’ investigational gene therapy SPK-8011 safely and effectively prevented bleeding episodes and the use of clotting factor VIII (FVIII) for up to four years in men with hemophilia A, according to the latest data from a Phase 1/2 trial and its extension study.

When my youngest son was 4, he wanted to play baseball. My nerves were shaky as I took him to register for the fall season. I hoped he would enjoy playing the sport. When the first game of the season rolled around, my wife and I sat in the bleachers,…

My son Caeleb begins his sophomore year of high school in a few weeks. Before school starts, he will participate in summer band. Summer band was a highlight of my high school days. Even marching outside in the heat was fun because working with a tightknit group to put on…

Two years of preventive treatment with Genentech’s Hemlibra (emicizumab) safely and effectively lowered the number of bleeds in people with hemophilia A and clotting factor VIII (FVIII) inhibitors, according to final data from the Phase 3b STASEY trial. Development of antibodies against the therapy (anti-drug antibodies) was…