31 Days of SMA: Zoë Watson
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Kevin Schaefer, —
Articles by Kevin Schaefer
31 Days of SMA: Ryan Manriquez
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Reversing the Caregiving Roles in Our Household
“Pack my suitcase?” That famous quote from “Home Alone” coincides with a shellshocked expression on Kevin’s face. For a character who has no concept of independence at the start of the movie, packing his own luggage for a family vacation seems…
Embracing Disability Pride Month
July is recognized as Disability Pride Month, as it coincides with the anniversary of the signing of the Americans with Disabilities Act of 1990. Whereas this law secures basic rights for those of us with disabilities, disability pride is a phrase that encourages…
The Beauty of Interacting with Strangers
“I want to know, can you show me/ I want to know about the strangers like me.” These lyrics from Phil Collins’ “Strangers Like Me” play during an iconic scene from Disney’s “Tarzan.” As Tarzan and Jane swing through the jungle,…
Saying Farewell to My Beloved Canine Assistant
What follows is possibly the most difficult column I’ve ever written. Since 2020 has a recurring theme of being a never-ending dumpster fire for everyone, I suppose this bit of news was inevitable. A week ago, my family and I said goodbye to my service dog,…
The Annual SMA Conference Was a Little Different This Year
I was supposed to be in Disney World right now. I was planning on a week in the happiest place on Earth with some of my favorite people, followed by a comic convention back home. My summers tend to be full of travel and adventures, and this one…
Lean on Me — Literally
“I can’t carry it for you, but I can carry you!” Samwise Gamgee shouts in “The Lord of the Rings,” as he carries Frodo up Mount Doom to destroy the ring of power. It’s an iconic tear-jerker movie moment,…
Thoughts About Risdiplam: Pros and Cons of Starting a New Treatment
As I lay sideways on the operating table for my most recent Spinraza injection, my neurologist asked me about an upcoming SMA therapy. He and I like to make small talk about medical breakthroughs while a radiologist jams a needle into my neck. We were discussing…
That Pesky Pre-Spinraza Injection Fatigue
When I began my journey with Spinraza (nusinersen) in November 2017, I had little more than an inkling about what to expect. At the time, I was more concerned with the procedure than the potential benefits. The idea of letting a radiologist stick…
