I have a variety of satellite radio stations saved as favorites in my car, with Broadway, The Blend, Classic Rock, The Groove, Symphony Hall, and ’80s as the ones I enjoy the most. The ’80s music transports me to my high school days, which were filled with beautiful memories.

Last Thursday, I visited Washington, D.C., to join my fellow blood brothers and sisters in lobbying legislators regarding issues that directly affect the bleeding disorders community. I must admit that I was a little nervous. Several times, I wondered, “What in the world am I doing here? I’m only…

Service dogs are typically thought of as necessary companions for the visually impaired, but service and therapy dogs can be a practical solution for people with a variety of chronic illnesses. As well as being a trusted friend, service dogs can expand owners’ motor abilities, granting them new independence and allowing them…

San Francisco-based Catalyst Biosciences has completed toxicology studies of its new drug CB 2679d/ISU304 — a highly potent next-generation coagulation factor to treat hemophilia B. This  follows the therapy’s recent Investigational New Drug (IND) approval, a necessary step before starting clinical studies, by the Korean Ministry of Food and Drug Safety. Patients…

Problems at work, limited engagement in recreational activities, and less relationship satisfaction contribute to a lower health-related quality of life (HRQoL) and greater pain severity, as reported by adults with hemophilia B, according to a study. Findings also showed that anxiety and depression in caregivers of children with this…

I’m a big fan of the stage version of “Wicked.” In the opening of the second act, Glinda (the “Good”) is standing in front of the citizens of Oz, sharing her delight in being center stage. She expresses her humblest gratitutions (you’ll understand why I’m using that strange…

Save One Life, the first globally focused organization to sponsor children with bleeding disorders one-on-one, recently celebrated its 15th anniversary. More than 130 guests from the hemophilia community worldwide gathered in New York City Sept. 29 at the Manhattan Penthouse on Fifth Avenue. The guest of honor was…

The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to BE-101, Be Biopharma’s B-cell treatment candidate for hemophilia B. This designation is given to therapies that are meant to treat rare diseases, defined as conditions affecting fewer than 200,000 people in the U.S. It offers…

New swimming trunks, sunscreen, cap, sleeping bag — gathering these items means it’s time for hemophilia camp! My son Caeleb is so excited that he is driving his dad and me a little crazy. Two years ago, he broke his wrist the night before camp and wasn’t…

A Phase 1/2 clinical trial on SB-FIX, an investigative gene-editing therapy for hemophilia B, is now authorized to enroll adult and adolescent patients in the U.K., Sangamo Therapeutics announced. Approval from the U.K.’s Medicines and Healthcare Products Regulatory Agency (MHRA) will make this the first genome-editing study conducted in Europe. Once safety…