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.On April 10, the United States will celebrate Siblings Day, a day to honor and appreciate the bond we share with our siblings. I happen to have the best one around, so I asked if he’d do an interview with me to share his perspective on living with SMA…
These days, I’ve been soaking up all the true crime content I can set my eyes and ears on. Documentaries, podcasts, “Dateline” episodes that I now look forward to every Friday night — I’ve become engrossed in real-life stories about missing persons and murders. More specifically, I have become hooked…
Recently, in the SMA News Today Forums, a handful of members shared that they were embarking on new treatment journeys with both Spinraza (nusinersen) and Evrysdi (risdiplam). Reading such posts makes me feel a level of happiness I don’t often feel for strangers on…
The day after Christmas marked one year since I began this whole self-quarantine thing. And the most unnerving part about it is that I have yet to receive my trophy to commemorate this milestone. That may be a bit of an exaggeration, but there is logic behind my reasoning. After…
January marks the eighth anniversary of when my blog came to life. I was never much of a writer prior to launching my blog. In fact, when I announced that I’d be blogging in between classes and schoolwork during my final semester of college, my family…
In the midst of decking the halls and savoring all that’s merry and bright, December also serves as a season of reflection for me. It’s my chance to look back on the last year and take inventory of all the things I experienced and learned, determine…
In October, I fulfilled a childhood dream of mine by finally opening an online art shop. For years, friends and family encouraged me to do this. While I’m no Rembrandt, I have always enjoyed expressing my creativity in the form of drawings. Art is my favorite…
Recently, my little hometown in New England experienced one of Mother Nature’s many shenanigans: a decent-sized snowstorm in October, or “Snowtober.” This isn’t the type of climate we are conditioned to around here. Nevertheless, it was quite the sight to see a blanket of 6 inches of snow with trees…
I’m still trying to wrap my head around this one: I will be turning 30 at the end of the month. To keep my columns professional, I used a period for that previous sentence. But please know there were many exclamation points swirling around my brain. This milestone birthday is…
“So, what’s your silver lining?” a friend asked me one night in late spring. My parents and I had recently decided to go forth and allow outdoor visits again, as long as our guests followed social distancing and mask-wearing rules. He was the first visitor I had in months. I…
