Columns

I’m fairly frequently asked what the hardest part of living with SMA is, but no matter how many times I hear the question, I seldom know how to answer it. Each day brings its own unique hardships, so how I respond changes based on the struggles of that…

While most of my elementary school days are a bit fuzzy in my head, lately I can’t stop thinking about how we used to play dodgeball during gym class. Our class would split into two groups, we were given red and blue Nerf balls, and the last person standing…

We columnists at BioNews know our submission and publishing schedule well in advance, and by that, I mean months in advance. The draft for my columns is due by 8 a.m. on Monday before its publication on Wednesday, twice each month. Having gained a bit of wisdom over…

For the past several months, I’ve been obsessed with stories about financial fraud by perpetrators of elaborate schemes. Hence, I fell down the rabbit hole of the story of Elizabeth Holmes, the disgraced CEO and founder of Theranos, a startup company Holmes promised would change the face of…

A few days ago, I received my 17th injection of Spinraza (nusinersen), one of several SMA treatments approved by the U.S. Food and Drug Administration. Every four months, I go to the hospital for a maintenance dose administered via a cervical injection. When I started this…

No matter how hard I try, there are things I continually forget. Take, for example, the few times I’ve hosted parties. I’m an introvert through and through, so hosting isn’t exactly my forte, but I love spending time with friends. I was so excited for my very first dinner…

Here comes the latest adventure in the saga to remove my kidney stones. Spoiler alert: I came close to leaping over the hurdle of getting the surgery done. Unfortunately, though, I didn’t quite make it to the operating room. Relax. The reason had nothing to do with…

In my mind, Luke Skywalker was in love with me. For context: I was never much of a Lego girl. But I was a “Star Wars” girl. It stood to reason, then, that the Lego Star Wars games were right up my alley. I loved everything to do…

My mom and I enjoy treating ourselves to a relaxing afternoon of mother-daughter bonding at the nail salon from time to time. We don’t have one specific salon that we always go to. While there are some that we like better than others, we often pick one that’s in…

For most of my teenage and early adult years, I had big dreams of working in fashion. As a creative person, the behind-the-scenes work always intrigued me the most. I loved the process of concept to creation, the thought that went into the garments, what inspired…