My wife and I sat by the pool and watched our 3-year-old super fish glide through the water. The skill he displayed with a set of floaties wrapped around his arms took our breath away. Our son became one with the water as he swam across the bright blue surface.

I am originally from Texas, so I know the meaning of the word “team.” The Lone Star State reveres sports organizations like no other place in the country. Friday nights in the fall are overwhelmed with football, marching bands, and great times to visit with friends. Everyone gathers together with…

I am a musician who has played in orchestra pits, wind ensembles, chamber groups, and orchestras. I even played antiphonal oboe one Christmas! Music is powerful. It transforms you and allows you to escape for a few hours from the regular happenings of the day. However, most people…

There are moments in life that seem to disappear, while others have burned into my memory. I can remember a moment that took place 20 years ago, and my heart rushes as though it happened only seconds ago. Sometimes that can be a good thing, but sometimes the…

Both of my sons have expressed frustration at having a bleeding disorder. After experiencing a problematic infusion, each has cried out, “I hate having hemophilia!” While they are almost 10 years apart, the same response lets me know that they are “getting it.” Sticking a needle in a child’s arm…

The National Heart, Lung and Blood Institute (NHLBI) is hosting a State of the Science Workshop on May 15-16, 2018, in Bethesda, Maryland, to include input from the hemophilia community into a coordinated strategy for future basic, translational, and clinical research. Although preregistration is closed, on-site registration…

Teaching hemophilia patients who have undergone joint replacement surgery how to administer their intravenous (IV) self-infusions in sterility, can decrease the rate of infections post-surgery significantly, a six-year education program shows. The program outcomes will be shared at the upcoming World Federation of Hemophilia 2018 World Congress May 20-24…

A newly identified class of stem cells in blood vessels, called vascular endothelial stem cells, were able to repair injured vessels and ease bleeding symptoms in a mouse model of hemophilia, researchers at Osaka University in Japan report, suggesting these cells may treat this bleeding disorder. The vascular endothelial stem cells, or VESCs,…

I recently spoke to members of the Sangre de Oro Chapter of the National Hemophilia Foundation, based in Albuquerque, New Mexico. They are my family. We gathered to “kick off” the upcoming Unite for Bleeding Disorders walk. We had a friendly competition to see whose team…

At least 800 people representing some 45 countries are soon expected to gather in Austria’s capital city, Vienna, for ECRD 2018, the 9th European Conference on Rare Diseases and Orphan Products. The May 10-12 meeting is sponsored by Eurordis, the Paris-based group that defines itself as a “patient-driven alliance”…