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.For a good chunk of last year, I dreaded when people asked how I was doing. To an extent, I understood their logic. They were genuinely curious about my well-being, and showing their concern showed that they cared. But the truth was that I wasn’t doing all…
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 the lives lost too soon to this debilitating disease and those who are still living in spite…
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. Most days, I was struggling to make ends meet, always trying to juggle healing my body,…
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 of life — especially the valleys. Finding valuable takeaways from every difficult situation in my life…
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…
