Columns

I once read that fear is the other side of the coin to excitement, pleasure, or comfort. Without any research into whether the statement is true or false (it’s true), I…

An investigational gene therapy that targets nerve cells thats’s being developed by Exegenesis Bio was well tolerated and improved motor function in a mouse model of spinal muscular atrophy (SMA), a study shows. Based on…

In my favorite movie of all time, “The Princess Bride,” there’s a scene I love because I can relate to it and have learned a valuable life lesson from it. And today…

A man with type 3 spinal muscular atrophy (SMA) and no history of diabetes developed diabetic ketoacidosis, a severe diabetes complication, which researchers said may be linked to metabolic changes. SMA can cause major loss…

“Don’t worry, we all got the Alyssa lesson before we started working here,” the new fellow joked after having completed his second nasojejunal (NJ) feeding tube exchange on me. Though everyone in the room had a good chuckle,…

An infant with spinal muscular atrophy (SMA) type 1 and neutropenia was successfully treated with with Zolgensma (onasemnogene abeparvovec-xioi), according to a case report. Neutropenia, which refers to low levels of immune cells called neutrophils, increases…

Anyone can experience ironic twists and turns in life, and those of us with SMA are no exception. In my previous column, I wrote about how my mom and one of my day…

I recently got a new wheelchair! Thanks to the good folks at Numotion, I’m happy with the upgrades, including a new seat cushion, a phone holder, and headlights. My friends have been asking me what it’s like to be…