The 1980s were my favorite decade. I was in high school, and my music was the most important thing in my life. I practiced hard for auditions in the hopes of making the Texas All-State Band. Life was good. My perception of that decade changed after my first…

When “MacDonald the Younger” was 5, a social worker from the hemophilia treatment center gave his name to the Make-A-Wish Foundation. They granted my son’s wish to go to Disney World. I couldn’t believe that a 5-year-old child would want to go to a theme park filled with great…

To help people understand the science behind hemophilia and other bleeding disorders, digital content agency Believe Limited will present its first science fair this fall. Sponsored by commercial gene therapy company Spark Therapeutics, the science fair will be held at the National Hemophilia Foundation’s 71st Bleeding Disorders Conference…

The National Hemophilia Foundation (NHF) is inviting the country’s bleeding disorder community and others to participate in a first virtual Unite for Bleeding Disorders Walk on Oct. 10. The walk provides a means to raise funds for and awareness of disorders such as hemophilia. Due to the…

What do developmental disabilities, French bread, endometriosis, nutrition, English tourism, and bleeding disorders have in common? They all claim March — or a select day or week during the month — for awareness. Organizations dedicate this time to educating the public through local and national gatherings and social media campaigns.

I arrived late for the concert. An usher whisked me to my seat, as my husband and our son Caeleb had already arrived. As I walked down the aisle, feeling very conspicuous in my clerical collar (I didn’t have time to change), I noticed the backs of hundreds…

Greetings! I’m writing from Orlando, Florida, my temporary oasis from the wrath of Hurricane Ian. Last week, my mom and I evacuated to this inland city from Punta Gorda, on the coast in the southwest part of the state. Staying was not an option as my mom is oxygen-dependent…

Some years ago, when my youngest son, “MacDonald the Younger,” was about 7, he had an internal bleed into his right knee just before Thanksgiving. I was scheduled to lead a “Thanks Living” service that Tuesday, but we quickly realized we would be celebrating the holiday in a hospital…

A new analysis of two Phase 3 clinical trials confirms that extending preventive treatment with Alprolix is safe and leads to markedly decreases in bleeding episodes of severe hemophilia B patients. The results were recently presented at the 59th Annual Meeting of the American Society of Hematology (ASH) in…

Researchers reviewed the use of high-purity concentrates containing two plasma molecules that are lacking in patients with Von Willebrand disease (VWD), a hemorrhagic disorder. These products may be a good strategy for managing pediatric patients with VWD and hemophilia A (HA) who do not respond to other treatments. The study, “Human Von…