On a Sunday morning in mid-November, I opened my email to a newsletter from one of my favorite writers, Catherine Andrews. In it, she named the past 15 years of her life as being particularly contractive. She struggled with everything, from her relationship with alcohol to dating and creativity.
The clock ticked accusingly on the wall. A lab technician had been inspecting my arm for the better part of 10 minutes, all in search of a vein that would put out a nominal amount of blood. Normally, I trek all the way downtown for lab work. Because of…
Some people live for cold weather. They hate the heat, for some strange, inexplicable reason, and live for the day when they can pull out their chunky knit sweaters and thick, fuzzy socks. I am not one of those people. Aesthetically, I love the colder months. I love candles and…
Every person with SMA deserves to have comprehensive care and to know they'll be taken care of, no matter what happens, from birth to death, says patient advocate Brianna Albers.
First in a series. “What was your support system like growing up?” I was on the phone with a researcher from Augustana University in South Dakota. We were discussing my transition from pediatric to adult care as someone with a disability (in my case, SMA). I’d just finished writing…
Growing up, my pediatrician was more than a doctor; she was part of the family. She supported me through all of life’s transitions, from puberty and menstruation to my transition to adult care when I turned 20. She even attended my high school graduation party. She knew all of my…
I’d just survived a car accident in Phoenix while road tripping with my parents from our home in Minnesota to the 2022 Cure SMA conference in Anaheim, California. (Long story short, my dad ran over a particularly nasty curb in a gas station parking lot. Any other vehicle…
In another world, I am my mother’s daughter, waking with the sunrise and heading to bed no later than 9 p.m. But in reality, I take after my father, who sees early risers as the enemy to end all enemies. We both hate mornings with a passion, and have designed…
Note: This column describes the author’s own experiences with Evrysdi (risdiplam). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. On our way home from the annual Cure SMA conference, I told my mom, “Wouldn’t it be funny if…
I didn’t even know about the “Barbie” movie until I saw people talking about it on social media. I watched the trailer and thought, “That looks like a funky little movie.” But I wasn’t particularly enamored with it. I figured I’d watch it once it hit streaming services,…
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