From left, Antoine and Janelle. (Photo courtesy of Janelle Fiesta) Day 7 of 31 This is Janelle Fiesta’s story: When I was in elementary school, I knew that I was physically different from my peers. Besides being the only student in a power wheelchair, I wasn’t…
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Rehabilitation sessions using a robotic suit called ATLAS 2030 improved joint strength and mobility in three boys with spinal muscular atrophy (SMA) type 2, according to data from a clinical trial. While wearing the device, the boys, who could not walk independently, were able to complete tasks involving standing,…
SMA Awareness Month is upon us! To celebrate and remind everyone that raising awareness includes talking about our daily lives and relationships, I’m honored my best friend, Brianna Albers, said yes to the crazy idea of us interviewing and challenging each other publicly. Please read her interview with…
Initiating a disease-modifying therapy (DMT) before the onset of symptoms and at the earliest time possible results in the best outcomes in infants with spinal muscular atrophy (SMA), with most achieving otherwise unachievable motor milestones and within the normal age range. This is particularly crucial for infants likely…
For most of his life, Jose Flores avoided interacting with the spinal muscular atrophy (SMA) community because he felt out of touch with it. An SMA type 4 patient, Flores didn’t need a wheelchair until he was 22, and found it difficult emotionally to see children who weren’t…
Longtime readers of my column will know that I am fellow columnist Sherry Toh’s biggest fan. Navigating SMA alongside her has been one of the greatest honors of my life. This week, Sherry and I thought it would be fun to interview each other — not only…
With that headline, I’d expect this column to belong to my friend and SMA News Today colleague Kevin Schaefer. After all, he’s not shy about sharing less than pleasant aspects of living with SMA, including detailed stories about his trips to the bathroom. But believe…
Before I began writing today’s column, I recorded video interviews for a rather well-known brand here in the United States, focusing on my role as chief creative officer at an adaptive fashion company. While I don’t necessarily love public speaking, the larger issue at hand is often finding a…
Muscle fasciculations, or twitches, in adolescents and adults with later onset forms of spinal muscle atrophy (SMA) were detected best with a muscle ultrasound, a study concluded. Muscle ultrasound combined with a physical examination is useful for screening adolescents and adults with weakness in muscles closest to the center…
SMA Awareness Month is coming up in August. The question for me is, what’s the best way to raise awareness about this disease? My thoughts are that it is best to share that sometimes life can get a little dark for those of us with SMA. Over the past…
“MomMom! MomMOM!” When hollered out in glass-shattering decibels, my grandma moniker can mean anything. During my recent extensive time in charge of our grandchildren, Clara, 6, and James, 4, I’ve dashed to the scene of what sounded like emergency status more than once. One episode of Clara’s “MomMOM!” revealed…
Columnist Ari Anderson finally had surgery to remove kidney stones, which eased his pain, but he faced some challenges along the way.
Listen to the latest episode of The Spinal Muscular Atrophy Podcast, hosted by forums director Kevin Schaefer.
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