Finding Humor in Stinky Situations
I always get hit with a wave of back-to-school nostalgia when September creeps up on the calendar. The days of shopping for supplies, picking out a first-day-of-school outfit, and being excited and anxious…
Life, One Cup at a Time
— Alyssa Silva
Alyssa Silva is a writer based out of Providence, Rhode Island. She was diagnosed with SMA type 1 in 1991 when she was just 5 months old. Aside from writing, Alyssa is the chief creative officer for an intimates brand and runs a small business selling her artwork. In her free time, you can find her canceling plans to hang out with her golden retrievers, watching reruns of “The Office,” and convincing others why Taylor Swift is the greatest of all time.
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How new SMA treatments are turning hope into reality
Last month, the biotechnology company Scholar Rock submitted an application to the U.S. Food and Drug Administration requesting approval of an experimental add-on therapy to treat spinal muscular atrophy (SMA). The investigational drug…
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Spinraza Has Impacted My Life More Than I Thought
Lying on my couch one day in late August, I thought about how the previous weeks had been unexpectedly challenging. I was watching one of my favorite (albeit trashy) reality television shows. I’m not…
How a Cup of Tea Helps Me to Grieve the Absence of a Caregiver
Over the winter, I drank a piping hot cup of ginger tea every night before bed. It was the only remedy that I could confidently say helped to lessen my…
Why I Have Such a Strong Affinity for Football
If you are an avid football fan like me, I have great news. We don’t have to endure a Sunday without football for the rest of the year! Typing this makes me giddy, for…
On Letting Joy and Pain Coexist
Last weekend, my cousin, sister-in-law, and I had a girls’ night out. We picked a spot in a cute, historic town, ordered espresso martinis, desserts, and cheered a summer well spent and our not-so-little…
A Weekend Getaway Requires Meticulous Planning
“Raise your hand if your return to reality has been a struggle.” That was the text I received moments after being set up on my phone to write this column. I had to…
Why I Skipped My Column Last Week
In case you missed it, I skipped writing a column last Friday. I wouldn’t say it was by choice, even though one could argue that technically I requested the week off. If it had…
What Fuels Me Amid the Stress of Planning a Fundraiser
As I write this column, only 11 days are left before my nonprofit organization hosts its 10th annual gala for spinal muscular atrophy. Eleven. And while 11 has always been my lucky number,…
Why I View My Life As a Deck of Cards
There’s a famous quote by Randy Pausch in his book “The Last Lecture“ that says, “We cannot change the cards we are dealt, just how we play the hand.” My heart holds so…
Life in the Fast Lane Leaves Me Struggling to Keep Up
The title of this column may be a tad deceiving — so allow me to clarify. My wheelchair only goes 6.2 miles per hour, and when you have an irrational fear of birds and…
I Wish That Living with My Complicated Kind of ‘Normal’ Were Easier
Sometimes, I wish it were easier. I wish it were easier for doctors to pinpoint the root cause of my mysterious daily symptoms. I would like to receive answers that…
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…
