Columns

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. “The drug likely won’t be effective on you. You’re in your 20s, and you’ve deteriorated to the point where…

Jasmine Ramos embraces life with SMA. (Photos courtesy of Jasmine Ramos) This is Jasmine Ramos’ story: I was born in New York City on Aug. 10, 1995. I lived in the Bronx with my parents and two older sisters until I was 2. We…

Ira Walker enjoys an afternoon at Florida’s South Beach. (Photos courtesy of Ira Walker) This is Ira Walker’s story: Throughout 38 years of life, I’ve traveled, met extraordinary individuals, seen more than 20 operas, been the recipient of great guidance, and occasionally received peculiar…

When I was a little girl, there was a period when I frequented the orthopedic surgeon’s office. Back and forth we went, visit after visit, debating whether I should have surgery to put rods in my spine. Though my scoliosis was severe, my orthopedist hesitated at the…

  One of Molly McGlone’s many chipmunk friends sits on her shoulder. (Photo courtesy of Molly McGlone) This is Molly McGlone’s story: My name is Molly. I am 28 and live in the Upper Peninsula of Michigan. I was diagnosed at…

For years, slogans with the “F-bomb” (for a certain expletive) have expressed utter contempt for catastrophic diseases, social injustices, or whatever else riles folks up. The first such campaign I remember was about cancer. I certainly didn’t disagree with the desire to eliminate the ravages of the disease, but…

  Christie at his 27th birthday party. (Photos courtesy of Luke Christie) This is Luke Christie’s story: In December 2019, I was forced to admit that I could not afford to live on my own. Despite my best efforts, I…

“Hey, buddy, don’t get a speeding ticket!” “When was his last X-ray?” “Oh, wow, you work!” For whatever reason, society loves to infantilize disabled people. It’s practically a hobby for some people, be they medical professionals or middle-aged pedestrians looking to test their comedy skills when they see a…

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…

Friends Eli Rangel, left, Michelle Corley, center, and Tyler Dukes, right, attend the 2023 Cure SMA conference at Disney World. (Photos courtesy of Eli Rangel) This is Eli Rangel’s story: Picture this: Two teens sitting in the back of high school English class, playing…