Last week, I wrote about the personal impact that this year’s Cure SMA conference had on me, as well as the relationships I built during that week in Dallas, Texas. In this column, I’ll be sharing my perspective on the research component of the conference.
I guess the cat’s out of the bag. The featured photo here is the first official cast photo of Amazon’s upcoming “The Lord of the Rings” television reboot. Apparently, they wanted something different and modern, hence the name “The Fellowship of…
At the time of writing this, I’m sitting in my hotel room for the 2018 Annual Cure SMA Conference. My caregiver and his girlfriend are here with me, my parents are at dinner enjoying themselves, and this room is both accessible and spacious.
With my SMA, one might think that pretty much any kind of physical activity is out of the question for me. I use a power wheelchair, have severely limited use of my arms, I struggle to turn my head to the side, and if my driving…
As I’ve written in previous columns, my college years were some of the best years of my life. I discovered my passion for journalism, made lifelong friends, became more independent, and most of all, I acquired the perfect nickname: Schaef-Dawg. Credit to my former…
App.com recently ran a story about a college student with SMA at Georgetown University. Anna Landre graduated from Freehold Township High School, in New Jersey, as valedictorian in 2017. She is currently thriving as a college undergraduate and was recently offered a summer internship.
This week, my Facebook news feed was filled with graduation pics, friends posting sentimental messages about the times they had in college, and of course, even sappier posts from their parents. Then, if friends aren’t graduating, they’re getting married, starting new jobs, or moving away from…
After my first injection of Spinraza (nusinersen) last November, I posted on Facebook to tell all of my friends and family how it went. Amid the “Glad it went well!” and “Praying for you” comments, my former youth pastor said that he couldn’t help but think…
As I’m writing this, my butt is pretty freaking sore. No, I didn’t go bungee-jumping this weekend or hurt myself bull riding; nor did I go to a marathon of all the Marvel movies leading up to “Avengers: Infinity War” and…
Twitter is an interesting place. On one hand, it provides a platform for me to share the things I love with like-minded people and to connect with other internet and pop-culture addicts. I love waking up in the morning to memes, witty one-liners, movie conversations, and…
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