Beach time is fun time. For Brady, center, to partake in the fun, both his brother, Lucas, left, and father, Kevin, help push and pull his customized beach chair. (Photos courtesy of Kevin Chan) This is Kevin Chan’s story: “It is not fair!” These words are hard to hear…
Throughout August, SMA News Today is recognizing Spinal Muscular Atrophy (SMA) Awareness Month with a variety of stories that represent different perspectives on life with SMA that we hope help to inspire and empower our readers. These stories highlight some of the unique challenges of living with SMA, as well as stories of hope and inspiration and other topics that help to generate awareness among the SMA community. Follow along with the series here or visit us on Facebook or Instagram using the hashtag #SMASpotlight.
Candis Welch. (Photos courtesy of Candis Welch) This is Candis Welch’s story: Becoming Ms. Wheelchair California 2023 has given me a newfound pride in my life as a disabled woman. However, I have lived with spinal muscular atrophy (SMA) for decades, and my experience has been eye-opening,…
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 moved to Manhattan shortly after…
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 advice. I was paid as…
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 10 months…
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 was unable to secure caregiving…
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 Go Fish, while the teacher…
Eloise Pillarella enjoys an accessible hike through an autumn forest during a visit back to New Paltz, New York, her college town. (Courtesy of Eloise Pillarella) This is Eloise Pillarella’s story: Being a high school science teacher with spinal muscular atrophy has taught me much about the world…
At 2 and a half years old, Andrew Cherico was diagnosed with spinal muscular atrophy type 3. (Photos courtesy of Andrew Cherico) This is Andrew Cherico’s story: Hello! I am 19 years old and from New York City. SMA has affected my life in ways I never imagined,…
Alina Poklad enjoys traveling, including her trip to Seville, Spain. (Photos courtesy of Alina Poklad) This is Alina Poklad’s story: I was born in Estonia, which was a part of the Soviet Union, and it became an independent country when I was 5 years old. When I was in…
