The Power of Social Media in the SMA Community
Over the past weekend, pictures from the annual candle lighting for SMA that took place on Aug. 11 inundated my social media feeds. As most of our community knows, this lighting represents…
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.
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Finding gratitude, even amid the toughest battles of life with SMA
Living with spinal muscular atrophy (SMA) often means facing many hardships and uncertainties. With physical limitations, emotional hurdles, and complex medical issues, SMA is constantly shaping and shifting my life. Though these are…
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Why I Wouldn’t Change a Thing During Fundraising Season
It seems like just yesterday I was living in a perpetual state of chaos. My life was going a million and one miles per hour, and there was no stoplight in sight.
After Hard Lessons Come New Beginnings
The past four weeks have taught me some hard lessons, which came as no surprise. I’m the type of person who constantly searches for meaning and purpose during every peak and valley…
The Day I Was Reminded of SMA’s Unpredictability
Can I get a show of hands of all the folks who agree that living with SMA can be incredibly unpredictable? OK, maybe that wasn’t the best way to take a poll. However,…
Think Before You Stare
There’s a paperweight that sits on my desk that reads, “People are going to stare. Make it worth their while.” Apparently, a man named Harry Winston stated this. I did a…
First Introductions and Awkward Handshakes
What is the first thing you do when introduced to someone? You start off with a simple greeting, state your name, and extend your hand for a firm handshake, right? I know…
Fears, Friends, and Sound Advice
Today’s column is brought to you by the gratitude I hold in my heart for friends who give sound advice and are always willing to talk about the hard stuff. I think…
Swiping My Wheelchair Card
When I was in 8th grade, I had an English teacher who saw right through me, in a good way. She didn’t give me special treatment, but she understood my needs and…
SMA and Accessibility at the Happiest Place on Earth
My father once made a promise to me as a little girl. I had been in the hospital’s intensive care unit for yet another respiratory infection, and he wanted to give me…
My Amtrak Experience
I’d like to preface this piece by giving a shout out to one of our very own columnists, Brianna Albers. Brianna shared her experience with Amtrak on SMA News…
Patiently Waiting for an Itch to Be Scratched
I’m going to state the obvious: The list of things this disease prevents me from doing is a long one. So, when I have to rely on others, patience has become an…
My College Experience: A Snapshot of the Good Old Days
On this day five years ago, I graduated from college. I realize I’m only 27, but writing that makes me feel a little extra old. I could’ve sworn it wasn’t too long…
