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As those of us with spinal muscular atrophy (SMA) know all too well, people with disabilities often face a slew of assumptions and misconceptions. To improve awareness and understanding, I want to address five of the most prevalent myths I’ve encountered, especially as I’ve become more visible and…

Near the end of 1995, my husband, Randy, and I purchased an old farmhouse, situated on almost 15 acres with a little mountain. There was no trail up the mountain, but our optimistic (and younger) selves were determined to investigate what was on top. As we hiked up, we…

My 7-year-old niece, Lily, has an unparalleled level of curiosity. She asks questions about the world, when we’re going to Disneyland next, and whether I’ve seen every episode of “Full House.” The answer to the latter is yes. Lily also inquires about my life with SMA,…

If you’d asked me a year ago what my plans were for SMA Awareness Month, I would’ve come back with a laundry list of items, from Instagram Reels to the Minnesota Walk-n-Roll event put on by Cure SMA. This year looks a little different. Part of it…

To highlight SMA Awareness Month this August, I could go on and on describing the physical aspects of my life that occur every day. For example, I could talk about the aggressive respiratory care my mom and my nurses provide me to keep my lungs clear. Or I…

Zack and Zarek Elizondo are brothers born three years apart. They live in San Benito, Texas, where they make music and produce social media content together. Zarek has spinal muscular atrophy type 2 as did our late sister, Zarinna, who passed away in 2017. She was 18…

In a tourist shop on the coast of Lake Michigan a few summers ago, my mom spotted a sticker depicting the town’s lighthouse in the style of my favorite painting, Vincent Van Gogh’s “The Starry Night.” She suggested that it’d look cool on my power wheelchair,…

Connie Chandler is a social media manager and writer from Fort Wayne, Indiana. She has spinal muscular atrophy (SMA) type 2 and works alongside her brother for the nonprofit We Carry Kevan. As an adult who has grown up with SMA, I’ve learned the necessity of being my own…

With August officially here, I feel like I’m in a competition with time, frantically trying to make the most of summer before it’s gone. In doing so, I’m putting unnecessary pressure on myself. I’m measuring my days by how much I took advantage of the warmer weather and beating…

“It’s just a flesh wound.” The black knight utters this famous line in “Monty Python and the Holy Grail” after losing both arms in battle. He then continues to fight in a slapstick manner and taunt his opponent as blood gushes out of his sides. Ah, I…