Diagnosed at 5 months of age, Alyssa has set out to raise awareness about life with SMA Type I through writing. By getting personal and being open about her trials and triumphs, she wants the world to know that SMA can put up a good fight, but we can always fight back exceedingly harder. Aside from writing, Alyssa is the community director for an adaptive fashion brand and has founded her own nonprofit called Working On Walking. In her free time, she enjoys discovering new coffee shops within a 50-mile radius of her hometown in Rhode Island.I was a sophomore in high school when my parents and I agreed to home-school me during the winter months. It was a spur-of-the-moment decision, but a necessary one nevertheless. In January of that year, I had been hospitalized with double pneumonia for the first time…
I admit that this column’s title is one I never thought I’d write. But alas, it is 2020, and most of this year has been a series of “never thought I’d ever” moments. So, for the sake of what’s on my heart today, I’ll accept how unconventional the title is…
In a speech to hundreds of people at my nonprofit organization’s annual gala, my mother stood at the podium and delivered her words poignantly and eloquently. She has always had a way with words, knowing what to say at the right time while leaving the audience…
It’s officially August, which is kind of hard to believe. Nonetheless, many people in the SMA community have anticipated this month for quite some time. Not only is it SMA Awareness Month, but it is also when the U.S. Food and Drug Administration was expected to…
This is going to be a tough truth to admit, mostly because I’m still a little embarrassed by it all these years later. But, here we go. When I was originally offered this role as a columnist for BioNews — the company that publishes this website — I turned…
It’s no question that children are curious little people, and as someone in a wheelchair, I have often witnessed their curiosity. If I were to guess, I’d assume disabilities aren’t something they’ve seen in their short little lifetimes. As a result, they stare and allow their curiosity to get the…
As I’m sure most of us can attest, the world is a messy place right now. It is impossible to ignore. While I have never experienced anything as unprecedented as these times, I have experienced the messiness of life with SMA. I’m finding myself leaning on past experiences to help…
For the past few months, I have been experiencing some debilitating health issues. I’ve spoken with my doctors. I’ve tried different medications. And while as a team, we have figured out ways to give my body some reprieve at times, the root issue has yet to be diagnosed and resolved.
Digital detoxes are all the rage these days, and for a good reason. If you didn’t already know, a digital detox is time spent disconnecting from all devices with a screen — smartphones, computers, and television to name a few — for a certain period. Whether…
There’s a brand new medication currently waiting for me on my kitchen counter. I see it every single day. I debate taking it. I chicken out. I’ve developed some health issues in recent weeks (thank you, stress) that prompted me to have my first telemedicine conference call with my team…
