I spend a lot of time in the kitchen during the holiday season. I enjoy creating my favorite dishes and finding new and exciting recipes. Many people follow recipes strictly, but I find joy in realizing they’re more of a guide than an exact science. Using a guide to cook…

A review is continuing into a resubmitted application for approval of Roctavian (valoctocogene roxaparvovec), a gene therapy for adults with severe hemophilia A, with a planned advisory committee meeting having been canceled. The U.S. Food and Drug Administration (FDA) had requested, but now no longer intends, to meet with…

Today, as we take time to celebrate the gift of one another, I can’t help but think about the many trials my 16-year-old son, Caeleb, faced this year as a result of hemophilia. As a child, Caeleb struggled with frequent breakthrough bleeds, which have left him with excruciating…

The first gene therapy for adults with hemophilia B — branded as Hemgenix (etranacogene dezaparvovec) — has been approved by the U.S. Food and Drug Administration (FDA). Meant to be a one-time treatment, Hemgenix is expected to keep bleeding in check in the long term, while also allowing patients…

During November, many people participate in daily gratitude challenges on social media. Finding something to give thanks for is easier on some days than others. Some seasons are filled with grateful moments, while others are filled with grief, sorrow, and exhaustion. My youngest son, Caeleb, is 16 years old…

Lately, I’ve been binge-watching the Korean TV drama “Extraordinary Attorney Woo.” It tells the story of a young lawyer with autism and the challenges she encounters (and does her best to overcome) in her life, career, and relationships. I instantly got hooked on the show for two reasons.

Despite the increasing use of preventive factor VIII (FVIII) replacement therapy, people living with hemophilia A in Japan still experience a significant disease burden, according to a recent study. Using information from health records databases, researchers found that while patients have used increasing doses and spent more on medical…

I like my cabinets neatly arranged. But the kitchen cabinets are often hit-or-miss in the organization department. For example, the cabinets that house plastic lids and containers can be treacherous. When organized, the cabinet allows us to see what’s available. Every cover matches its proper container, and items sit neatly…

Centessa Pharmaceuticals is set to open PRESent-5, an observational feeder study of hemophilia patients who could then move in pivotal clinical trials of SerpinPC — an investigational therapy for hemophilia A and B patients, regardless of disease severity or inhibitor status — that it plans to launch…

Kendall Fitzpatrick and I have much in common. Like me, she has hemophilia B and von Willebrand disease. She’s a registered nurse, works for a specialty pharmacy, and is an outspoken advocate for women with bleeding disorders. She lives in New Kent, Virginia, and is mother to a…