In the wake of my mother’s tragic passing in February and the havoc wreaked by Hurricane Ian last year, my living space in Florida has undergone a profound transformation. My mother and I had always depended on a cleaning person to keep our condominium tidy. Those services have been…

Venture philanthropy fund Pathway to Cures (P2C)) has invested $500,000 in Five Liters, which is developing noninvasive, nonpharmacological neuromodulation therapies for treating inheritable blood and bleeding disorders, such as hemophilia and von Willebrand disease (VWD). “Investing in Five Liters’ early-stage research is a critical step in addressing unmet…

I’m part of a clergy group that meets monthly and has seven members from several denominations. Over the years, it’s been a safe place to discuss any issue, from church to home. We formed a covenant with one another to keep our conversations confidential. When sharing with my colleagues,…

Alaska, Antarctica, and Greenland have something in common: They’re a few of the places where glaciers are present. A glacier is a large, slow-moving mass of ice and snow that forms over an extended period in areas where more snow accumulates during the winter than melts during the summer. Many…

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 first attended a Bleeding Disorders Conference in October 1998. The National Bleeding Disorders Foundation (formerly the National Hemophilia Foundation) offered the event during Halloween week in New Orleans. My wife, Cazandra; my oldest son, Julian; and my mother, Ruby, entered our hotel with me, not sure…

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…