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 ... Read more
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 ... Read more
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 ... Read more
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. ... Read more
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 ... Read more
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!” ... Read more
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 ... Read more
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 ... Read more
Last week, I wrote mostly about my trip to New York City, and how my parents and I managed to drive through rush-hour traffic in Times Square. Once we ... Read more
Before I go any further with this column, let me go ahead and get this out of the way: My parents are awesome, and I saw “Hamilton” on Broadway with ... Read more
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