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…
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 made it into the heart of the city, plenty more adventures were to be had that…
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 my mom last week. Go ahead and throw your virtual pitchforks at me…
Growing up, I only had a handful of friends with SMA. As a result of my desire to be “normal,” I didn’t show much interest in engaging in any kind of disability community. Aside from participating in the annual Muscular Dystrophy Association (MDA) Muscle Walk fundraiser with…
Last week, I wrote about how living with SMA requires me to be proactive. When I want something or I desire to be more independent, I often have to develop creative solutions to overcome physical limitations and logistical issues. This applies to acquiring caregivers, getting transportation, and…
Over the years, I’ve talked with many SMA individuals and people with other disabilities who crave more independence in their lives. Beyond the physical limitations that come with having a disability, the biggest frustrations have to do with finding resources to become more independent. Society doesn’t exactly make…
