Embracing My Inner Alien – a column by Kevin Schaefer

January 21, 2020January 17, 2020

Rare and Resilient: My Adventures in Philadelphia

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

Amid its heart-pounding fight sequences and images of Michael B. Jordan carrying car tires in the middle of the desert, the film “Creed II” offers a poignant representation of disability. ... Read more

January 14, 2020January 9, 2020

Let 2020 Be the Year of Disability Representation

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

I just finished watching “The Ataxian,” a documentary from 2015 about Kyle Bryant, a bicyclist living with Friedreich’s ataxia (FA), a rare disease which shares commonalities with SMA. The ... Read more

January 7, 2020January 2, 2020

The Humorous Interactions That Stay with Me

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

A few months ago, my colleague Brianna Albers wrote an excellent column about ableism in interactions with strangers. People pity those with disabilities and say things such as, “I’m ... Read more

December 17, 2019December 13, 2019

A Robot Named Otto Transformed My Life

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

Four years ago, I put on my big-boy pants and finally learned how to feed myself. Throughout my high school and college years, I was too lazy to pick ... Read more

December 10, 2019December 6, 2019

The Movies that Made Me: Life Lessons and SMA

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

During the recent Thanksgiving holiday, I spent a lot of time reading, going to movies, and streaming shows at home. I particularly enjoyed the Netflix documentary series “The Movies ... Read more

December 3, 2019November 27, 2019

My 10-year Challenge: Reflections on a Decade

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

If you’ve been on social media lately, you’ve probably seen a flood of posts with the hashtag #10yearchallenge. This trend, popular on sites such as Instagram and Facebook, prompts ... Read more

November 26, 2019November 21, 2019

My Rare Disease Family Goes Beyond SMA

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

Just a couple of years ago, I knew little to nothing about cystic fibrosis (CF), a genetic disease that affects approximately 30,000 people in the United States alone. My perspective ... Read more

November 19, 2019November 15, 2019

The Art of Rejuvenation: Time with Fellow Comic Nerds Inspired Me

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

My computer screen stared at me as a wave of unread emails and messages flooded my inbox. I work in management, so it’s not uncommon for me to respond ... Read more

November 12, 2019November 13, 2019

My Quality of Life Is as Important as My Physical Health

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

Recently, I spoke with my friends Jim and Becky Berry on the SMA News Today Podcast. In late 2018, they lost their eldest son Carson, who was a college ... Read more

November 5, 2019November 6, 2019

Taking Stock of the Advances in SMA Treatment and Research

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

Recently, I attended the 2019 Cure SMA Chapter and Leadership Conference in Boston. There, I connected with friends I had met through previous conferences and listened to presentations from ... Read more