Embracing My Inner Alien – a column by Kevin Schaefer

July 28, 2020July 27, 2020

Reversing the Caregiving Roles in Our Household

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

“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 ... Read more

July 14, 2020July 10, 2020

Embracing Disability Pride Month

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

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 ... Read more

July 7, 2020June 30, 2020

The Beauty of Interacting with Strangers

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

“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 ... Read more

June 30, 2020June 27, 2020

Saying Farewell to My Beloved Canine Assistant

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

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 ... Read more

June 16, 2020June 12, 2020

The Annual SMA Conference Was a Little Different This Year

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

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 ... Read more

June 9, 2020June 5, 2020

Lean on Me — Literally

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

“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 ... Read more

May 26, 2020May 22, 2020

Thoughts About Risdiplam: Pros and Cons of Starting a New Treatment

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

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 ... Read more

May 19, 2020May 15, 2020

That Pesky Pre-Spinraza Injection Fatigue

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

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 ... Read more

May 12, 2020May 8, 2020

Managing SMA Is Like an Ongoing Chess Match

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

Puzzles are all the rage these days. Since the onset of the COVID-19 pandemic, countless friends on my social media have turned to jigsaw puzzles as a newfound hobby. ... Read more

May 5, 2020April 30, 2020

SMA Humor Writes Itself

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

The comedian Brad Williams has a great one-liner about writing jokes. Williams’ observational humor is predominantly rooted in his experiences as a man born with achondroplasia, a type of ... Read more