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.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…
The other day I found myself daydreaming on the way home from yet another hospital appointment. The monotony of the ride was all too familiar to me. This time, however, my spirit felt a little more crushed than usual and my energy lower. If the walls of…
Although Mother Nature seems to have other plans lately, the days crossed off our calendars have us inching closer and closer to summer. Ah, yes, summertime, when the weather is fine and everyone feels extra self-conscious about their “summer bods.” Achieving that “perfect” beach body is at the…
On April 10, social media exploded with pictures and posts pinned with #NationalSiblingsDay. Using it, people shared sweet or comical words about their siblings and what they mean to them. I, too, was among the millions of posts shared. However, it was difficult for me to condense…
