My husband pastors the local First United Methodist Church, where I serve as a deacon. When a parent (or two) goes down the pastoral path, their children are along for the ride. Some preachers’ kids love church, and others, not so much. My youngest son, Caeleb, falls somewhere in between. He runs the soundboard on Sunday mornings, and most of the time, he’s on his phone. I mean, he is a teenager. During the service, congregants share their joys and concerns. People raise their hands, eager to share a moment of happiness, an answer to a prayer, or a prayer concern. Last Sunday, I was surprised ..read more

I recently came across a thought-provoking video featuring Betty Reid Soskin, a remarkable 102-year-old woman with a unique perspective on marriage. Throughout her long life, Soskin has embraced various roles, including daughter, wife, mother, casual songwriter, and, perhaps most notably, a ranger with the National Park Service until she retired at the age of 100. In the video, she reflected on pivotal moments, such as the passing of her father and two husbands, which made her realize that she was no longer defined by a man. Soskin said that if she were to live her life again, she would choos ..read more

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