Two longtime bleeding disorders advocates, who are the parents of a son with hemophilia B, have made a founding donation to Pathway to Cures — dubbed P2C — the new venture philanthropy fund of the National Bleeding Disorders Foundation (NBDF). The transformational gift was added to the estate…

I wish more people would see my husband, Jared, the way our daughter sees him. In her eyes, he’s a revered figure, just short of a cape-wearing superhero. Now nearly 5, she’s at an age when most little girls demonstrate a special, almost romantic, adoration for their daddies. But perhaps…

Physical therapy (PT) plays a crucial role in the management of hemophilia. While it may seem counterintuitive for people with bleeding disorders to benefit from physical activity, PT is essential for overall joint health and pain management. However, my recent journey tells a slightly different tale. It’s a story…

I entered the bedroom of my youngest son, Caeleb, one recent morning to offer him my usual cheerful greeting. That’s when I found him lying in bed in excruciating pain. Caeleb has hemophilia A, and years of damage from internal bleeding episodes have left him with little…

I marvel when I watch reporters on the news who can deliver their reports in the midst of gunshots, riots, battles, and air raids, events that many in the U.S. might find difficult to comprehend. These brave men and women seem always prepared to hop on a plane to anywhere…

Preventive treatment with Eloctate (efmoroctocog alfa) for up to five years led to sustained reductions in all bleed types for children, adolescents, and adults with severe hemophilia A, according to data from two Phase 3 trials and their open-label extension study. New analyses of these pivotal trials also…

Last week, I was privileged to attend Genentech‘s Rare Blood Disease Summit at its campus in San Francisco. I’ve been proud to serve on this biotechnology company’s Women in Hemophilia advisory board for the past two years. The invitation-only summit was a small but powerful gathering, bringing together the…

The U.S. Food and Drug Administration (FDA) has cleared for laboratory use CRYOcheck Factor VIII Deficient Plasma with VWF, a way of detecting factor VIII (FVIII) deficiency in blood samples. Now available in the U.S., Precision Biologic’s manufactured plasma — the liquid part of blood that…

Over the next few weeks, I’m taking a short sabbatical. I realized I needed time to regroup, rest, and renew my spirit. Little triggers that crept into my brain warned me I needed to care for myself. Failure to adhere to these warning signs often leaves me angry,…

What does your pain feel like? Is it burning, sharp, pulling, shooting, or achy? Describing pain is difficult. In fact, many words used to describe pain are metaphors or similes: It’s like being stabbed by a knife or burned by a hot stove, for example. Yet a lot of people…