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.I’d imagine if anyone who knows me were to describe me in one sentence, it would go something like this: “Oh, Alyssa? She’s that writer girl who runs a nonprofit organization for her disease, drinks way too much coffee for her own good, and has an unhealthy obsession…
I almost accidentally drank chunky coffee the other day. How’s that for the introduction of all introductions? I thought about easing you into it slowly in an attempt to avoid making your stomach squirm. I explored how I could go about this storyline in a manner that would…
I came up with the idea for this column at 5:45 a.m., when I’m usually just falling into a deep REM cycle. (Sleeping has never come easily for me.) I wish I could say I was up at that ungodly hour (mornings also never come easily to…
One of the most frequently asked questions I receive from readers, friends, and even family members, is how I physically write my columns. The evolution of my ability to write has changed drastically over the years. I will try my best not to bore you with the nitty-gritty details, but…
In May 2017, I became an auntie to a beautiful little boy named Lincoln Anthony. I’ll never forget the day we heard the news. It was a sunny Saturday morning in early fall when my brother’s affectionately named “demon dog” darted into the house wearing a shirt. I…
I had a friend in college who was very much a free spirit. He always went with the flow, never sweated the hard stuff, and was the kind of person who was always up for an adventure. To kill time and unwind together, we used to hop in…
Can I be totally real with you for a second? Putting yourself out there into the world is no easy task. Being honest, sharing your truth, and inviting cyberspace into your own little, unique world is an incredibly vulnerable feeling. What will people think? Are you sharing too…
I think I can speak for the majority of the disability community when I say that we all crave a little more empathy and understanding from others. While I don’t expect a stranger on the street to fall in love with me at first sight, I do expect…
Last week, I wrote about the harsh reality that sometimes is SMA. I retold the story of my attempt to drive through the mountains of New Hampshire and how after breaking down at a gas station, I realized my body had other plans. I explored the…
Crying at a random gas station in rural New Hampshire was on my long list of things I thought I’d never do. Yet, there I was, two hours away from home, coming undone and growing angrier than ever at a disease that was beyond my control. I’ve been…
Get regular updates to your inbox.