I taught choral music in a few local school districts in the Houston metropolitan area in a former life. One year, a friend of mine in the bleeding disorders community asked if I had a group that could provide entertainment at the hemophilia Christmas party. I told her…
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Splash! A kid’s plastic drinking cup falls to the floor, spilling water all over. “Oh, no!” a toddler exclaims, noticing the accident. She picks up a rag and runs it over the wet spot on the ground. “Wipe,” she says. This is a common scenario in our house these days now…
The coronavirus is turning lives upside down. A good friend recently tested positive, and when they told me, I was uncertain about how to respond. Should I say I’m sorry? That they will be OK? Not to worry? Knowing what to say isn’t easy. It reminds me of when…
Navigating the holidays can be taxing, even in the best of times, even in the best of families. Navigating the holidays with a bleeding disorder adds to the holiday challenge. Navigating the holidays with a bleeding disorder during a global pandemic? Well, that may be a bit…
It started the fall of my daughter’s sixth-grade year in school. While I had listened to DJ Elliot Segal of the radio talk show “Elliot in the Morning” for nearly 20 years by then, I’d done so mostly solo. My husband found no value in the show, and I…
A Unique Perspective on a Season
Before having children, my definition of a season of life did not contain color. Everything appeared black and white. If there was a medical issue, it lasted for a little while and soon passed. Nothing remained for long. The most significant medical problem I faced was when I broke my…
Many people see spring as the season for cleaning. Winter months call for homes to be closed tightly to keep the heat in and the winter chill out. Spring allows for the opening of windows to clean the soot and grime that accumulates over the colder season. I normally do…
Living One Day at a Time
Lately I’ve been feeling stuck. My life seems to have taken on the appearance of an infinite to-do list. The moment I tick off a box, three more appear. Every day, I am literally out of breath running errand after errand, with the ultimate goal of somehow staying afloat. Bills…
Long a food literature devotee, I continually marvel at the seeming effortlessness with which authors, home chefs, and Michelin triple stars approach the kitchen. Their sense of matter-of-fact wonder at gathering simple or impossible-to-find (except in a French market) ingredients simultaneously fills me with awe and consternation. How did these…
AMT-061 (etranacogene dezaparvovec), an investigational gene therapy uniQure is developing to treat hemophilia B, successfully increased factor IX (FIX) activity and controlled bleeding — while markedly reducing the need for other treatments — in the Phase 3 HOPE-B clinical trial, top-line data show. These findings will be presented at…