I’ll never forget a particular moment in the fall of 1995. I met my wife, Cazandra, at one of our favorite restaurants right after work for an early dinner. As a waitress led us to our table, Caz appeared to be carrying a secret that, if not released,…

Last year, I traveled to Chicago and saw the masterpiece “A Sunday on La Grande Jatte.” The artist, Georges Seurat, captured a beautiful scene utilizing a technique known as pointillism. Each dot contributes to the complete work of art. To leave anything out is to change…

A friend called to tell me her teenage daughter finally received a diagnosis of mild hemophilia. Her daughter experiences bleeding complications and had been seeking a diagnosis for more than two years. While it is a relief to have one, it is another story to figure out what the…

BioMarin Pharmaceuticals is seeking marketing approval in Europe for its investigational gene therapy, valoctocogene roxaparvovec, for the treatment of adults with severe hemophilia A. The company has submitted a marketing authorization application (MAA) to the European Medicines Agency (EMA) for the experimental gene therapy, formerly…

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…

Switching to a different clotting factor VIII (FVIII) product was not linked to a greater risk of developing neutralizing antibodies against FVIII, or FVIII inhibitors, in people with hemophilia A, a recent study reported. Changing treatment also had no impact on a patient’s immune profile or on therapy efficacy.

In keeping with its mission to change how members of the bleeding disorder community think about their condition, Octapharma USA has joined with GutMonkey to provide a challenging week-long, water-based experience aimed at boosting patient confidence in managing disease. With an Octapharma grant, 10 participants in “Leading X…

My 13-year-old son, Caeleb, is a victim of bullying. This school year had a better start than the previous one until a couple of boys decided to pick on my mighty warrior. Name-calling and lies are hurtful, but at least words don’t leave marks on our bodies. But when…

Spiral notebooks, pencils, glue sticks, and highlighters make my heart happy. These items signal the beginning of the school year. I have fond memories of buying new pencil boxes and the perfect backpacks for my sons. I always look forward to taking them shopping for school supplies. Now that my…

The holiday season brings happiness and joy to many. Homes are adorned with lights and decorations, and people wear clothing in festive colors. The excitement is contagious. However, many people find this time of year to be exhausting and even painful. When they are living with a rare or chronic…