Tuesday morning, March 8. Bright rays of sun had already passed through our floor-length bedroom windows, but my sleep-deprived brain was fighting to keep my eyes shut for a few more minutes. The day before I had worked myself into a mental breakdown, which had zapped my energy completely. “Wake…

The Institute for Gene Therapies (IGT) has launched, with the aim of maximizing the potential of gene therapies in genetic disorders such as hemophilia. Comprised of industry leaders, scientists, and patient advocates, the IGT’s overarching goal is to set the foundation for a modernized regulatory and reimbursement…

My Peloton bike doesn’t go anywhere. That’s the whole point. It sits in my bedroom, stationary, pedals turning against resistance I set myself, wheels spinning in place while the rest of the world stays exactly where it is. No cross-country route, no open road, no wind at my back. Just…

As part of a Coalition for Hemophilia B contest, people with hemophilia B, their siblings, and caregivers are  invited to design a comic or coloring book that tells a story about how they manage this rare blood disease. There will be a $500 award for winners in each of…

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.

There are moments when I’m reminded just how much I depend on something most people rarely think about. I live with von Willebrand disease, and my treatment depends on Humate-P (antihemophilic factor/von Willebrand factor complex [human]), a plasma-derived therapy. This medication is more than just a vial;…

The World Federation of Hemophilia (WFH) is commemorating having successfully distributed, since 1996, over one billion international units (IUs) of factor and non-factor replacement therapies for people with inherited bleeding disorders, such as hemophilia, through its Humanitarian Aid Program. Donations from the program have improved the quality…

Sobi and Sanofi announced an additional donation of up to 500 million international units (IUs) of clotting factor therapy in support of the World Federation of Hemophilia‘s Humanitarian Aid Program. The clotting factor goes toward treating people with hemophilia in developing countries where access to medicine is…

Caeleb, my youngest son, is 19 and preparing for his second year of college at the University of New Mexico. He’s experiencing an issue at school that required him to write a letter explaining the difficulties he faced because of hemophilia during his freshman year. As a child, he…

My mighty warrior Caeleb is 12 years old and officially an inch taller than me. Every day he stands next to me, checking to see if that inch has stretched. I watch him from my office window, playing with his friends on the street; amazingly, he is turning…