My house is in a state of chaos. Julian, my oldest son, leaves for a summer job in the Appalachian Mountains of North Carolina on May 1, while Caeleb, my youngest son, graduates high school on May 18. My wife, Cazandra, and I feel the unspoken tension that both…
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Dosing has begun in a second group of hemophilia B patients enrolled in a Phase 1/2 dose-confirmation trial of the experimental gene therapy FLT180a, the treatment’s developer, Freeline, announced. The dose determined to be optimal in this study is expected to finalize plans for a pivotal Phase 3…
Catalyst Biosciences has announced new clinical data supporting the safety and efficacy of its lead candidate therapies for treating hemophilia. Factor IX (FIX) dalcinonacog alfa (DalcA) was found to safely prevent bleedings in adults with hemophilia B, while factor VIIa (FVIIa) marzeptacog alfa (activated) (MarzAA) was…
In the age of “cancel culture,” where snap judgments and public shaming abound, the journey from stigma to compassion is often fraught with challenges. I live with attention-deficit/hyperactivity disorder and bipolar II disorder, am a wife to a person with hemophilia, and formerly co-owned a business run…
Today, I became my husband’s dependent — officially. A few months ago, I wrote about being ineligible for health insurance because I was already five months pregnant when I applied for it. My only option was to register as my husband’s dependent. That meant he would have to share…
Last week I attended the New Mexico Annual Conference of the United Methodist Church. As a pastor, I must attend the conference every year. One positive aspect of the meeting is a focus on clergy health. A medical assistant measured me, took my blood pressure, weighed me, and took a…
I’m a pastor, so I encounter the word “grace” almost every day. Words of encouragement pour out of my mouth as I talk with parishioners struggling to make their way in the world. I often say, “Give yourself some grace. Everyone falls short of the mark, but that doesn’t…
Last week, I took Caeleb, my youngest son, to the University of New Mexico Health’s urgent care center, which is on the same floor as the Ted R. Montoya Hemophilia Program and Treatment Center. He’d been experiencing stomach and head pain for five days. I figured he had a…
It’s essential that we inform the world about struggles in the bleeding disorders community by showing them how to be advocates. We must teach our loved ones how to educate and inform those in leadership about the needs faced by those with hemophilia and other disease states resulting in clotting…