Columns

In the past two years, I’ve held seemingly every possible position on Spinraza (nusinersen). I went from elation in knowing that a treatment for SMA existed to being so fed up with the process that I never wanted to hear the word Spinraza again. The current situation is…

Ella takes great joy in slime. It’s the new craze these days. We sit at the kitchen table and pour glue into a bowl. We add other ingredients and before you know it we’ve made a squishy slimeball. She watches YouTube videos to get new ideas…

At the time of writing this, it’s been one week since the company I work for lost one of its true titans. On Sept. 26, our senior managing columns editor, Serena Lawrence, passed away. Beyond being one of the best editors I’ve ever had the pleasure…

“For the most part, my solutions to human problems have been simple ones—get more rest, do good work, take things a day at a time, and find some people to love.” –Mary Pipher, “Letters to a Young Therapist” It’s getting to be…

Can I be totally real with you for a second? Putting yourself out there into the world is no easy task. Being honest, sharing your truth, and inviting cyberspace into your own little, unique world is an incredibly vulnerable feeling. What will people think? Are you sharing too…

Kids with SMA have brittle bones, and Ella has had her share of breaking them. Just the other day she was sitting in her power wheelchair next to the coffee table. She was playing a game on her iPad. Her power wheelchair was “on,” and her…

A few months ago at church, an usher came up to me and made a gesture that was — in his mind — “nice.” Seeing me, the young guy in the wheelchair, he placed his hand on my shoulder and said in a loud voice, “Let me know…

It’s hard losing abilities you’ve had all your life. Of course, that’s just part of having SMA. Once upon a time, I could sit up on my own. Now I can’t. Once upon a time, I could feed myself and lift my phone on my own.

I think I can speak for the majority of the disability community when I say that we all crave a little more empathy and understanding from others. While I don’t expect a stranger on the street to fall in love with me at first sight, I do expect…

After I graduated high school, I had zero ideas of what I would do from there. The paths that young adults typically take were not workable for me. I couldn’t simply move into an apartment and get a job at Starbucks. I couldn’t go off to college,…