“No, I’m totally fine” are often my famous last words when I’m actually not fine at all. Sometimes when an illness arises, I’ll downplay my symptoms. I’ll chalk them up to having a bad day while disregarding my…
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For as long as I can remember, I have participated in the SMA community in some way. Whether it was opening a lemonade stand as a little girl, participating in a research study, or running a nonprofit…
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…
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…
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…
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…
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…
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…
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,…
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…
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…
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…
The day after Christmas marked one year since I began this whole self-quarantine thing. And the most unnerving part about it is that I have yet to receive my trophy to commemorate this milestone. That may be a bit…
