With deep sadness, we announce the passing of our dear friend and longtime contributor, DeAnn Runge. DeAnn had many roles at Bionews, the parent company of SMA News Today. She was a forum moderator, spinal muscular atrophy (SMA) community advocate, and member of our recently established Patient…
Jose Flores is a motivational speaker and author from Fort Lauderdale, Florida. He shares his life with spinal muscular atrophy (SMA) type 3 on his website joseinspires.com. Navigating a romantic relationship when one partner has SMA is a journey marked by unique challenges and profound rewards.
Hugo Trevino is a disability advocate and academic adviser from Chicago. He has spinal muscular atrophy type 3 and helps disabled students find success. Having a disability means I cannot do things on my own and it sucks because I need to ask for help with almost everything. As a…
Ty Dykema is an artist, musician, and punk rock connoisseur from Grand Rapids, Michigan. He has spinal muscular atrophy (SMA) type 2. Dykema and his friend Kevin Schaefer attend the Cure SMA Annual SMA Conference. Community is the one great and gentle unifying force that threads together each piece…
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 at…
For Connie Chandler, who lives with SMA type 2, advocating for herself is necessary, but advocating for others and speaking up for them is what she would rather be doing.
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,…
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…
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…
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