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.Even though I’ve been disabled all my life, I had never heard of Disability Pride Month until I scrolled past someone’s Instagram post last July. I guess that’s the beauty of social media: For every detrimental effect it has on our well-being, it can also serve as a…
Recently, someone I know commented, “Alyssa doesn’t let her disease define her.” I absolutely understood where they were coming from. After all, I have always been determined. I have always been that girl who thrives in a challenge and loves nothing more than being told she can’t do something. (Spoiler…
If I had to choose the top three places I frequented prior to the pandemic, they would be the local coffee shop, Target, and Boston Children’s Hospital. Thankfully, I mostly frequented the hospital for appointments and procedures, not hospitalizations. Even so, I have spent a good percentage of my…
I’ll never forget March of last year when the pandemic began. Many of us didn’t realize how serious it was, and we didn’t know what to expect, how to handle it, or what we were in for in the months ahead. My family and I watched the news closely, read…
During the height of the pandemic last year, a steady influx of people often reached out to me to check on my health. It was quite admirable. Friends, family members, and even people I had lost touch with would call or text for status updates, and I truly felt more…
Last week marked 30 years since my diagnosis day. So many emotions resurfaced as I reflected on the past three decades and all that has happened in terms of medical breakthroughs, challenges I’ve overcome, and how my prognosis has changed since I was first diagnosed. Back…
Growing up, I was a fairly well-behaved student. I did my homework. I paid attention during class. I always raised my wand (my way of raising my hand since I couldn’t physically do so) when I had a question, and I respected my teachers. In other words, I never caused…
On April 10, the United States will celebrate Siblings Day, a day to honor and appreciate the bond we share with our siblings. I happen to have the best one around, so I asked if he’d do an interview with me to share his perspective on living with SMA…
These days, I’ve been soaking up all the true crime content I can set my eyes and ears on. Documentaries, podcasts, “Dateline” episodes that I now look forward to every Friday night — I’ve become engrossed in real-life stories about missing persons and murders. More specifically, I have become hooked…
Recently, in the SMA News Today Forums, a handful of members shared that they were embarking on new treatment journeys with both Spinraza (nusinersen) and Evrysdi (risdiplam). Reading such posts makes me feel a level of happiness I don’t often feel for strangers on…
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