Embracing My Inner Alien – a column by Kevin Schaefer

August 20, 2019August 15, 2019

The Beauty of Personal Storytelling

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

It was my last semester of college, and I had room for one more writing class in my schedule. I already had two film courses, a literature survey, a ... Read more

August 13, 2019August 8, 2019

The SMA Community Is United in Diversity

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

I’ve been an active member of the SMA community for years, but one of my fondest memories from any SMA conference took place last year in Dallas, Texas. As ... Read more

July 30, 2019August 5, 2019

Dreading the Bed: Sleep Brings Vulnerability

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

“So, do you sleep in your wheelchair?” Believe it or not, I have been asked this question more than a few times. Granted, I don’t recall hearing it after ... Read more

July 23, 2019August 20, 2019

How to Hug a Wheelchair User with a Robotic Arm

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

Of all the technologies that I use in my everyday life, the two most important ones are my wheelchair and my JACO robotic arm. My chair keeps me moving ... Read more

July 16, 2019July 11, 2019

I Treasured Every Moment of Hanging Out at the SMA Conference

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

“Dude, use your robotic arm to grab my leg!” Superstar blogger Shane Burcaw said these words to me when I met him a couple of weeks ago. Having read ... Read more

July 9, 2019July 8, 2019

Flying with a Disability: National Lampoon’s Airline Extravaganza

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

Thanks to the fine folks who handled my wheelchair at the airport a few days ago, I’m now writing this column while sitting in my bathroom seat. My mom ... Read more

June 25, 2019June 20, 2019

I’m Learning to Recognize My Own Limitations

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

Since I started receiving my Spinraza (nusinersen) treatments in November 2017, my energy level has skyrocketed. Often, I don’t even realize just how good I feel now. Then I ... Read more

June 18, 2019June 27, 2019

My Bobblehead Days Are Behind Me

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

One of the ways that spinal muscular atrophy (SMA) has affected me physically is my posture. I’ve always had difficulty sitting up straight, and to this day I have ... Read more

June 10, 2019June 6, 2019

Finding the Sweet Spot

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

A few weeks ago, when I was preparing for my eighth Spinraza injection, I had to indulge in an activity that many of us with SMA dread. We manage ... Read more

June 4, 2019May 31, 2019

Research Advancements and Adults with SMA

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

On May 24, Zolgensma (previously known as AVXS-101) became the second FDA-approved treatment for SMA. This gene therapy from pharmaceutical companies AveXis and Novartis is a major milestone for ... Read more

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