Columns

Why I hate (part of) the 21st Century Cures Act

Even with SMA, my checkups have, for the most part, become pretty routine. Every six months, I drive 30 minutes to my nearest specialty clinic. While there, I see various doctors, each with their own unique vibe. My neurologist catches me up on all the books he’s read recently.

Finding light in the winters of life with SMA

A few weeks ago, I glanced out my window and instinctively squinted. Before me was my backyard covered in a blanket of ice and thick snow, blinding me with the sun’s reflection. The rocky hills were now shiny and smooth, and the frozen landscape glistened in a magical way. The…

Seeing myself in the world of the ‘Wicked’ film

When the movie version of “Wicked” hit theaters last fall and skyrocketed to critical and commercial success, musical theater enthusiasts everywhere felt validation. The blockbuster adaptation of the hit musical struck a chord with devoted fans, casual viewers, and anyone with a passing familiarity with “The Wizard of Oz” mythos.

I rely on caregiver support to maintain my independence

A few weeks ago, my mother injured her foot, temporarily limiting her mobility. As she struggled to get around, relying on others for assistance, she looked at me and said, “I never realized how hard this is.” That moment stuck with me — not because I was surprised, but because…