I’ve generally had an all-or-nothing mindset when it comes to working out. In the past, anything under 30 minutes would feel like a waste of time. The problem with my fitness regimen has been sustainability and consistency. However, I’ve found that starting slowly and gradually building up has been effective for me, with one recent exception. This year, I’ve been ramping up my Peloton bike routine, aiming for 20 minutes of cycling, three to five times a week. But last week, I made a seemingly innocuous decision that ended up causing some trouble. Accidentally selecting a 30-minute workout ins ..read more

The U.S. Food and Drug Administration (FDA) has approved the one-time gene therapy fidanacogene elaparvovec for treating certain adults with moderate to severe hemophilia B. The therapy will be sold under the name Beqvez as it is in Canada, where it was approved for a similar indication this year. Marketed by Pfizer, Beqvez is under review in the European Union. It’s now the second approved gene therapy for hemophilia B in the U.S., following the clearance of Hemgenix in 2022 for certain adults with hemophilia B. “This milestone is a testament to Pfizer’s continued effort to advance the ..read more

“Merrily We Roll Along” is my new favorite musical. The plot of this Stephen Sondheim show centers on three college friends and the disintegration of their relationship. What’s interesting is that the play is in reverse chronological order; we witness the final destruction in the first scene, with the end being hopeful as the exuberant friends look forward to college graduation. The musical is a chilling look at what can happen when hope gives way to greed and love gives way to unfaithfulness. While it ended happily, I was nonetheless unsettled — because I knew what lay in store for the poor ..read more

GeneVentiv Therapeutics has received a $2.5 million grant to conduct further preclinical tests on its one-time infusion gene therapy for hemophilia A and B patients with or without clotting factor inhibitors. The therapy, GENV-HEM, will be tested in a large study with a canine model of hemophilia, following promising results in mouse models of both hemophilia types. Funds also will be used to support studies evaluating the gene therapy’s distribution in the body and associated toxicology. These studies are expected to support a future investigational new drug application (IND) for the th ..read more

My favorite band, Fall Out Boy, has a song titled “The Kintsugi Kid (Ten Years).” Now that I think of it, my husband, Jared, and I celebrate 10 years together this April. In my eyes, he’s the “OG” Kintsugi Kid. Jared once wrote an article for Rappler, an independent news website based here in the Philippines, titled “Beauty in imperfection: How kintsugi can help PWDs,” referring to people with disabilities. In it, he talks about the Japanese art of kintsugi. In kintsugi, broken pieces of ceramic are mended with melted gold, creating an even more beautiful and valuable piece than the original ..read more

The Hemophilia Federation of America recently hosted its annual symposium in Indianapolis. Despite my desire to attend, circumstances didn’t align for me this year. One of the event’s highlights was the debut of digital content agency Believe Limited‘s latest cinematic offering, “On the Shoulders of Giants,” now available online. Last weekend, I seized the opportunity to watch it. The film starts by pointing out that for the first time in history, a generation of people with hemophilia is living past age 50. It follows Wayne Cook, a grandfather with hemophilia, as he embarks on a heartwarming ..read more

A generic version of DDAVP (desmopressin acetate), a therapy approved to control bleeding episodes in people with mild hemophilia A, is available in the U.S. Avenacy planned to begin shipping the therapy the week of April 15, according to a company press release. The generic is available under the name Desmopressin Acetate for Injection. It is supplied in single-dose vials that contain 4 micrograms (mcg) per 1 mL of solution or multiple-dose vials of 40 mcg in 10 mL of solution. Like the brand name medication, the generic is designed to be administered by intravenous (into the vein) or subcut ..read more

When my oldest son, Julian, moved back home, he knew that I, in my Methodist minister role, needed a couple of singers to help lead a 9 a.m. worship gathering. I debated whether to ask him if he could help me out, but before I could utter a word, he asked me if singing at the early church service would help me. I smiled and said, “Anytime I hear you sing, it is a great day.” My son missed only three gatherings until he left recently to do a show. The congregation and I appreciated his involvement in the church and dedication to bringing good music to those worshipping on Sunday mornings. Last ..read more

My favorite shows are “Criminal Minds,” “Bones,” and the “Law and Order” franchise. In these police procedural crime dramas, the suspense and action are exciting and the plot twists surprising. Episodes regularly depict hostage situations. Watching actors portray the fear and horror one must experience when being held captive is frightening, especially when I try to imagine being in the same situation. Could I ever be in a similar situation? While most people will never be physically held against their will, many caring for loved ones with chronic and rare disorders understand the concept of ..read more

As a “HemoWife,” I’ve become intimately acquainted with the intricate dance between physical and mental health. In recent columns, I’ve delved into the journey of navigating my husband Jared’s hemophilia alongside my own anxieties and explained how the two are connected. But mental and physical health are related in countless other ways, too. For example, people who experience anxiety or depressive disorders are at a higher risk of developing chronic conditions such as heart disease or diabetes. It’s an established fact that mental health is important for our overall well-being. Just like phy ..read more