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On either longer travels or day trips, I aim to have fun

I’ve written plenty about how hard I work to keep healthy and prevent emergencies. I work just as hard to figure out new ways to have fun, immersive experiences that can accommodate my physical challenges. Last year for SMA Awareness Month, I wrote that my dream was to travel across…

My life of privilege while living with SMA

What do my doctors and dates have in common? It’s that I’ve asked most of them this question: “Am I the first person with SMA you’ve met?” Surprisingly, I’ve heard a few doctors tell me no. I may be the first adult SMA patient they’ve treated, but they’ve seen…

My SMA awareness was zero … until it hit home

I was a conscientious student, highly motivated to excel whenever possible. My father was a public school teacher and later a principal at the elementary level. My mother taught piano at home. Neither parent browbeat my younger brother and me into obsession over schoolwork (or, for…