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.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, I imagine you’re nodding your head in agreement. You probably raised your eyebrows when you thought…
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 quick internet search of the fella, and it appears he was a well-known American jeweler in…
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 I’m going out of my way to state the obvious here, but stick with me. This…
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 that’s a key ingredient to living with SMA: getting comfortable with talking about the things that…
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 limitations, and respected them. Most importantly, she certainly didn’t walk on eggshells around the “innocent” girl…
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 an incentive to get better. I’ve always operated best when having a goal to attain, and…
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 Today last year and was incredibly kind in answering all of my questions and easing my…
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 imperative virtue. If I need an itch scratched, I wait for someone to drop what they’re…
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 ago that I was cramming into the early hours of the morning, wishing on a day…
I’ve used this space to share little snippets about the nonprofit organization I founded 18 years ago. I’ve shared who was my inspiration behind this foundation and how it all began with one little lemonade stand. Today, I’ll talk about what this organization stands for, and the…
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