Life, One Cup at a Time - a Column by Alyssa Silva

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.

Curiosity and Sweet Moments Build Special Bonds

As I was staring at a blank screen preparing to write this column, my little cousins Jackson and Mackenzie, who are 8 and 6 respectively, were playing with my nephew’s motorized car in my living room. Our fathers were on the back porch having a drink…

Small Spinraza Changes Yielded Big Results

I believe that the smallest changes can often yield the most impactful results. Someday when you reflect on your life’s culmination of little moments and modest actions, you will realize they’ve mattered more than the grand gestures. Just like the tiniest pebble can create a ripple effect so too can…

Let’s Foster More Acceptance

Last summer, I wrote about how having SMA is apparently an open invitation for people to stare at me. It sounds crazy, right? It’s almost as though people in wheelchairs are about to go extinct, so passers-by need to get a good, hard look at our kind. OK, I’m…

Feeling Grateful in Unexpected Ways

Do you ever have moments when a wave of gratitude hits you in the last place you’d expect? They are the kind of moments that make you stop and take inventory of your life, the kind where the littlest details suddenly become meaningful and significant. I’m a big fan of…

Celebrating Friendships and Beautiful Sunsets

Driving home from Boston one evening, I witnessed the sky paint a vibrant sunset as we cruised down the highway. Bright pinks and oranges swept across the view from my window as the radio blared through the speakers. A dear friend was in the driver’s seat, and as the sky…

Reaching the End of My Spinraza Cycle

A good way for me to gauge whether or not I’m due for another Spinraza (nusinersen) treatment isn’t by looking at a calendar or counting back the number of weeks from my last dose. It’s simply by feeling it. I’ve noticed a certain cyclical pattern in my experience with Spinraza,…

My Brother’s Earliest Memory of SMA Crushed Me

I recently asked my brother, Adam, what his earliest memories of SMA are. At the time of my diagnosis, he was only 2, but his sharp memory has served as a powerful tool whenever we’re reminiscing about our childhood. Adam has always been like that. Growing up,…