My Hopes and Fears Resurface When Others Start SMA Treatment
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…
Life, One Cup at a Time
— Alyssa Silva
Alyssa Silva is a writer based out of Providence, Rhode Island. She was diagnosed with SMA type 1 in 1991 when she was just 5 months old. Aside from writing, Alyssa is the chief creative officer for an intimates brand and runs a small business selling her artwork. In her free time, you can find her canceling plans to hang out with her golden retrievers, watching reruns of “The Office,” and convincing others why Taylor Swift is the greatest of all time.
Featured Post
A respiratory illness left me fighting for my life
As I lay in bed, willing my body to find some energy to write this column, a notification popped up on my phone. According to USA Today, a “quadruple whammy of viruses” had been…
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What Being Homebound for a Year Really Feels Like
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.
What I’ve Learned From Sharing Stories About My Life With SMA
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…
Stepping Into a New Me in the Year Ahead
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…
Starting a Small Business With SMA
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,…
Life With SMA Can Feel Like an Anomaly
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,…
Learning to Celebrate Life in New Ways
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.
Small Joys Are Bigger Than They Appear
“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…
What Home Schooling Was Like for Me
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…
The Message I Discovered in Celery Juice
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,…
SMA Strengthens the Heart
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…
Why I’m Sticking to Spinraza for Now
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…
