I met Jennifer Hastie last year at the Hemophilia Federation of America’s Mild Matters Summit in Tulsa, Oklahoma. Along with two of her three daughters, Jennifer has von Willebrand disease (VWD) type 2B, a rare variant. We share more than just a name: Jennifer is also 58…

As a pastor, my Sunday mornings prove very busy. I lead morning worship at 9 a.m., teach a Sunday school class at 10:15, and finish my morning with another service at 11. Most Sunday afternoons I can be found collapsed in my comfortable recliner and dozing. I’ll be exhausted from…

I recently stumbled upon a thought-provoking post by “Typical Pinoy Crap” (TPC), a well-known Filipino digital creator who shares insightful views about social issues. The post commented on a line from a song by the all-girl Filipino pop group BINI, titled “Karera” (“Race”). The line is…

Cazandra and Caeleb, my wife and youngest son, rode with me several years ago to see a movie in Albuquerque, New Mexico, near our home. Caz and I planned the whole day with one goal: to have fun. After the movie, we’d have lunch and then go to a…

I recently received an intriguing piece of jewelry in the mail. It’s a prototype of a design I hope to sell someday. But I loved it so much that I wanted one for myself. The design is rather goth-themed, featuring a coffin-cut black onyx gem in the center flanked…

In a reversal of a previous recommendation, the U.K.’s National Institute for Health and Care Excellence (NICE) has recommended that the National Health Service (NHS), England’s publicly funded health insurance program, should offer reimbursement for Hemgenix (etranacogene dezaparvovec) to eligible adults with hemophilia B. Reimbursement would come through…

For years, long periods in the hospital proved challenging for my family. My youngest son, Caeleb, required many extended stays because of breakthrough bleeding episodes related to hemophilia. We often tried to find ways to break the monotony of the sounds of medical machinery that frequently rang and…

Saying no has always been a challenge for me. I tend to overcommit, take on too many tasks, and then feel resentful toward the people or activities I didn’t want to engage with in the first place. For instance, I’m now on my condo board because I couldn’t say no…

My youngest son, Caeleb, and I recently visited the Ted R. Montoya Hemophilia Treatment Center (HTC) for his yearly checkup. This appointment was his first to the treatment center since turning the magic age of 18. Before leaving the house, we discussed what he should expect as a newly…

Picture this: I’ve finally settled down for some peace and quiet with my wife. I’m holding a nice glass of wine, and she’s sitting in her favorite rocking chair. Our two boys have found refuge in their bedrooms, and all seems right in the world. I turn to Cazandra…