Entering the hospital recently for what felt like the millionth time was not my idea of an afternoon well spent. Nevertheless, it wasn’t like I had much of a choice. My nasojejunal feeding tube requires me to go to the interventional radiology department every 10 days to get my…
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In my last column, I wrote about feeling as though I’m turning a page in my life. I want to foster a belief in spiritual hope and share it with others one-on-one. So how else am I turning the page, and how does it relate to hope? Let’s look…
Because my husband, Randy, and I had neither furniture nor money when we got married, we lived in furnished apartments for the first couple of years. We purchased the furniture in one of our last apartments for a ridiculously low price. When we bought our first house, my parents…
More work is needed to expand access to the gene therapy Zolgensma (onasemnogene abeparvovec) for people with spinal muscular atrophy (SMA) living outside of wealthy countries like the U.S. or Australia. That’s the argument made by researchers in the paper, “Gene therapy-based strategies for spinal muscular…
The clock ticked accusingly on the wall. A lab technician had been inspecting my arm for the better part of 10 minutes, all in search of a vein that would put out a nominal amount of blood. Normally, I trek all the way downtown for lab work. Because of…
People with spinal muscular atrophy (SMA) cleared acetaminophen, a common ingredient in pain medications, slower than healthy people, but this was generally not associated with evidence of liver toxicity for most patients, a study shows. Only one of 12 SMA patients developed elevations in markers of liver dysfunction, but…
With a brisk chill in the air and an impending snowstorm near, I’m reminded that it’s officially the time of year when people start asking me, “Where’s your coat?” It’s a valid concern on their part, I suppose. After all, when the weather drops below freezing, the right thing to…
If you asked me to describe the metaphorical status of games journalism this year, I’d say we’ve descended into carnage. Is that melodramatic? Perhaps. But journalism is a competitive field. When it’s subject to publications and departments closing, mass layoffs, and budget cuts, as it was this year, journalists struggle…
Disruptions to norepinephrine (NE), a brain signaling molecule, appear to be due to SMN protein loss and could contribute to disease progression in spinal muscular atrophy (SMA) patients, according to recent research. Levels of the molecule, as well as the enzymes needed to produce it, were deficient in a…
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