Many years ago, while working in the association management world, I had a director who challenged his managers (including me) to calculate the “true” cost of every program we proposed. My director’s challenge was not merely a budgetary task; it was an exercise in extreme critical thinking that moved us…
It is no secret that I am a pastor in the United Methodist faith. Many times, I find that having children with bleeding disorders challenges my theology and how I view the world, when considering divine providence over life and the struggles that make us human. I am…
The month of May can be an emotional roller coaster for many. Social media fills up with parents bragging about their children’s latest accomplishments — honor society, college acceptance letters, awards, and recognitions among them. It’s a great thing to have a network for connection and celebration of each…
I am a patient. I am an expert on my own health experiences. I am an educator. I am an advocate. Hemophilia is a rare disease. Being a woman with a disorder thought once to be male-only makes it complicated to navigate. I…
ASC Therapeutics has gotten exclusive rights to Expression Therapeutics‘ technology to develop liver-targeting hemophilia A gene therapies. “We have a common mission with Expression Therapeutics — to develop novel therapies that will dramatically improve the lives of persons with hemophilia around the world. Hemophilia A is a…
Our family took a recent trip to White Sands, New Mexico. The dunes were amazing. I had thought that my feet would burn due to the heat. However, I was pleasantly surprised to realize that the sand was cold. I enjoyed walking barefoot as we climbed to the top of…
Summer is upon us. Our kids have big plans: sleeping in, watching television, playing video games, sleepovers, vacations, and summer camp. From church camp to athletic and band camp, the summer is filled with opportunities. The bleeding disorder community also has summer camps across the country from June to…
Hemophilia is a blood disorder in which patients do not make enough of the clotting factors that control bleeding. Following accident or injury, people with hemophilia may be unable to stop bleeding. In severe cases, patients may bleed spontaneously at joints. While there is no cure for hemophilia, there…
Replacement therapy is one of the standard therapies used to treat hemophilia, a genetic disorder caused by the absence or defects in blood clotting factors. Hemophilia makes patients highly susceptible to bleeding due to a compromised cascade of clotting reactions that are necessary to “seal” injuries.
Von Willebrand disease (VWD) is an inherited bleeding disorder with an estimated prevalence between 23 and 110 per 1 million people. These numbers vary because the criteria for diagnosis are not always the same. Causes of VWD VWD is caused by mutations in the VWF gene. This gene…
Get regular updates to your inbox.
