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 film showcases a 3,000-mile bike race across the United States completed by Bryant and…
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 so sorry for this horrible thing you have to live with.” I’ve…
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 up a fork on my own. Instead, I just played the disability card and relied on the sympathies of…
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 That Made Us,” which tells the original stories of classic films like “…
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 users to post a picture of themselves from 2009 next to one from 2019.
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 is wildly different now that I have friends and co-workers with CF. I’ve learned…
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 to dozens of messages on a typical workday. This is not normally a problem, but for some reason, I…
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 student with SMA type 2. Some of my faithful readers may recall…
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 Cure SMA staff members, as well as updates from the pharmaceutical companies…
It’s my favorite time of year. I love the fresh autumn breeze that brushes past my face every time I go outside and the fact that it’s socially acceptable to run around in Freddy Krueger and Darth Vader masks. I’m…
