I use a handicapped placard for my youngest son, Caeleb, who has hemophilia and deals with complications from the clotting factor used to treat his illness, which causes him to have pain. Caeleb, 15, participates in his school’s marching band and practices after school four days a week. At the end…

Eptacog beta was safe and 100% effective at preventing bleeds during and after minor surgeries in hemophilia A patients with inhibitors, according to data from a Phase 3 trial. The treatment’s efficacy at managing bleeds dropped with major surgeries, with post-operative success seen in 66.7% of evaluated cases. Overall, these…

In June, my firstborn son, affectionally nicknamed MacDonald the Older, will turn 26 years old. Conversations include career plans after his major milestone. He hopes to sing on Broadway and continues to get better with age. A vocalist myself, I hear his progress and believe he has an excellent…

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…

Hospitalizations are disruptive. When someone has to go the hospital, day-to-day routines take a back seat. Being at the hospital becomes the top priority and life must move around the illness. But when a patient and family experience constant hospitalizations, this becomes their normal routine. My youngest son, Caeleb,…

Recently, my husband, Jared, and I decided to move into a new home. We’d been contemplating the idea since our daughter, Cittie, was born almost three years ago. Yet somehow, financial constraints always held us back. We wanted to be full-time parents to Cittie, at least during her formative…

A newly designed platform based on the principle of “reverse vaccination” could be used to prevent the development of an immune response that blocks the effectiveness of treatments for hemophilia and other disorders. “For nearly a third of patients with hemophilia A … their own immune system is…

The Hemophilia Federation of America (HFA) and the National Hemophilia Foundation (NHF) jointly launched the “Together Project,” in which the two organizations will work together to address issues affecting the bleeding disorders community. Most of the partnership’s efforts will center on written content creation and visual designs, which…

This week, we celebrate Balloon Fiesta in Albuquerque, New Mexico. Nearly 600 hot air balloons fly overhead while we stand in the grass, looking up at the beautiful sight. I cannot help but think back to when my youngest son was 8 years old and unable to walk. We…

Factor and supplies used to take over my kitchen. Boxes of syringes, Betadine swabs, dressing kits, monthly Sharps containers, and box upon box of factor arrived and needed to be organized and put away. The number of items was overwhelming. Sometimes the boxes would stay unopened for a…