Health Canada has expanded its approval of Rebinyn (nonacog beta pegol) as a routine preventive treatment for bleeding episodes in hemophilia B to patients under age 18. The therapy, developed and marketed by Novo Nordisk, is now available to all hemophilia B patients as a preventive (prophylactic)…

Last week, I wrote about the bond I formed immediately with my oldest son, Julian. Caeleb, my youngest son, recently reminded me of the unique bond he and I share. Toward the end of her third trimester, my wife, Cazandra, started to experience complications, so her medical team admitted…

Apologies aren’t easy. Sometimes when hurtful words are shared, an apology is in order. Likewise, a mistake that affects another person is also a time when an apology is needed. But why do people apologize when something is out of their control? My youngest son, Caeleb, is 16 and lives…

My husband, Jared, gets a lot of bruises. Not because he gets into brawls a lot, and most certainly not because we fight (although we like to troll people with these possibilities just for fun — dark humor, we know). His quick bruising is because he has severe…

From the time my wife found out she was pregnant, we celebrated a ritual each evening until the birth of my oldest son, Julian. Before we kissed good night, I put my face to her belly and sang the song “For Baby (For Bobbie)” to him. Without seeing…

Weeds. They’re inevitable. In the desert of New Mexico, where we live, fighting weeds after an active monsoon season means pulling them from xeriscape yards. The yard rocks make it difficult to eradicate weeds. It’s a tireless task to complete in the desert heat, especially when that active monsoon…

The U.S. Food and Drug Administration (FDA) has accepted a resubmitted biologics license application (BLA) from BioMarin Pharmaceutical requesting approval of the gene therapy Roctavian (valoctocogene roxaparvovec) to treat adults with severe hemophilia A. The FDA is now expected to decide by the end of March 2023 on whether…

Recently, I opened an email from a company inviting me to share my insights regarding bleeding disorders and how my family handles the struggles of chronic illness. Before my sons were born, I think I would’ve hit the delete button without giving a similar invitation a second thought. But…

A dreary day is unusual in the desert of New Mexico, where we live. When it happens, the sky opens, releasing a much-needed downpour of liquid gold. The dry ground is soaking up this scarce commodity. It’s a bad hair day for many who aren’t used to double-digit humidity, and…

BioMarin Pharmaceutical has resubmitted an application to the U.S. Food and Drug Administration (FDA) seeking approval of Roctavian (valoctocogene roxaparvovec), potentially the first gene therapy for adults with severe hemophilia A. The FDA delayed the company’s initial approval request in 2019, with the agency requiring two more…