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.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,…
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,…
Do you ever hop on social media and come across a post you feel was written for you, and only you? I know social media sometimes gets a bad rap. But at the same time, I don’t want to write social media off entirely. I love my online…
If it’s all right with you, I’m going to use this week’s column to vent about something that happened over the weekend. To most, it was nothing that would have stood out. In fact, I’m pretty sure my cousins who were with me at the time weren’t even…
According to the calendar and the extra hours of sunlight we’ve been getting a feel for, a new season is finally upon us. I love the message this time of year — the very beginning of spring — has always brought to the table. Spring marks the…
For those of you who don’t follow me on Instagram and see my absurd collection of pictures of my dogs, I have two retrievers named Wish and Vince. Vince, or Vince Charming as he’s affectionately called, is an English cream golden retriever and the family dog.
One of the most dreadful, ongoing battles I’ve experienced with my doctors in recent years is my inability to gain weight. At every appointment, during every procedure, and with every hospital stay come two words that, despite knowing they’re coming, still bring an awful sense of dread: “You’re…
As I get set up to type this column, the rain is steadily falling from the window behind my couch. The house is quiet and the coffee is still warm. It is Sunday morning, my favorite part of the week. I love the slowness this weekly time brings,…
Allow me to begin this column by traveling back in time to the days of middle school mathematics. Now, my memory may not serve me as well as it did during my school days (I’ll blame it on “old” age), but I do particularly remember sitting in class…
I always struggle with mental health at this time of year. Winter has that effect on me. Each year, I tell myself things will be different, so I map out a game plan for avoiding falling into my yearly rut. Podcasts are queued, books patiently wait to be…
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