The internet is a valuable tool for someone like me, especially for the purpose of social platforming. I can’t do much socializing in real life. Whether the environment is too loud for me to be heard, the venue is inaccessible, or the activity is something that I physically can’t…
Summer is here and in full force. Ice cream trucks, sprinklers, and lazy days abound. Bike riding also tops off the season. Ella can now join in a way that she couldn’t do before! Through the generosity of the Jonathan Goers Bike Club and the coordination of…
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.
I’m going to state the obvious: The list of things this disease prevents me from doing is a long one. So, when I have to rely on others, patience has become an imperative virtue. If I need an itch scratched, I wait for someone to drop what they’re…
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…
I’m writing this the night before my best friend’s plane lands in the U.S. I’ve been working nonstop the past three weeks to make sure everything is ready for her arrival, so this installment of my column probably won’t sound as nice or be…
On this day five years ago, I graduated from college. I realize I’m only 27, but writing that makes me feel a little extra old. I could’ve sworn it wasn’t too long ago that I was cramming into the early hours of the morning, wishing on a day…
The sheer enormity of SMA can easily become overwhelming. All the physical limitations can cause me to overlook the gifts and abilities I do have. I’ve found that it is imperative for me to identify my strengths, and run with them (OK, drive with them) to the absolute…
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…
My parents and I have been traveling to Iowa every weekend for the past few months. We recently bought a vacation home in Wisconsin, and we’ve been getting the farm that my mom inherited ready to sell. Other than painfully slow Wi-Fi and a less-than-comfortable bed…
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