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1 week ago | 
smanewstoday.com | Helen Baldwin |Steve Bryson |Halsey Blocher |Kevin Schaefer
Years ago, I taught kindergarten at a self-contained school for students with orthopedic and other disabilities. My charges were animated, and my assistant was delightful. At the end of my fifth year, my students were all mainstreamed to regular elementary schools, leaving me classless until days before the following year commenced. Mary, our school nurse, quietly described my new students, all of whom required skilled nursing in some capacity.
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4 weeks ago | 
smanewstoday.com | Marisa Wexler |Alyssa Silva |Helen Baldwin
The muscle-strengthening therapy apitegromab is being considered for approval by the U.S. Food and Drug Administration (FDA) as an add-on treatment for spinal muscular atrophy (SMA), with a decision expected around the start of fall. Scholar Rock, the company developing apitegromab, applied seeking FDA approval earlier this year. This week, the FDA granted priority review to the application and set Sept. 22 as its decision date, the company announced.
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1 month ago | 
smanewstoday.com | Marisa Wexler |Helen Baldwin
Activating a protein called potassium channel Kv2.1 may help improve motor function in spinal muscular atrophy (SMA), according to data from experiments done in mice that point to the protein’s potential as a target in SMA treatment.
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1 month ago | 
smanewstoday.com | Marisa Wexler |Helen Baldwin |Steve Bryson |Patricia Inacio
Activating a protein called potassium channel Kv2.1 may help improve motor function in spinal muscular atrophy (SMA), according to data from experiments done in mice that point to the protein’s potential as a target in SMA treatment.
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1 month ago | 
smanewstoday.com | Helen Baldwin |Lindsey Shapiro |Sherry Toh |Halsey Blocher
The revelation that my husband, Randy, and I were becoming newborn parents again called for a comprehensive to-do list. Our other children, Matthew and Katie, were in elementary school. With no intention of needing baby items again, we’d kept nothing. Katie, then 7, ecstatically helped me rectify that dilemma, and soon we were ready!Jeffrey arrived on May 18, 1997. We sailed along, going with the flow impressively.
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1 month ago | 
smanewstoday.com | Halsey Blocher |Marisa Wexler |Helen Baldwin |Lindsey Shapiro
When I backed off my van’s wheelchair lift, I didn’t find what I expected to. We had just parked at a restaurant we’d never been to in a different town, and I knew there would be a ramp onto the sidewalk to my left. I just didn’t think it would look like this. Public wheelchair ramps come in a few varieties, and in my 27 years of living with SMA, I’ve become familiar with them all — except the one that greeted me here.
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1 month ago | 
smanewstoday.com | Helen Baldwin |Ari Anderson |Marisa Wexler |Lindsey Shapiro
In September 1995, my parents began running the family’s newly acquired lodge on the stunning Blue Ridge Parkway. My husband, Randy, our two children, Matthew and Katie, and I lived about an hour away at the time. I drove up every day to help with lodge business. As the parkway’s fall colors worked their magic, we found an old farmhouse near the lodge and moved in. We discovered an old cemetery on top of the little mountain on our property. Talk about foreshadowing.
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2 months ago | 
smanewstoday.com | Marisa Wexler |Helen Baldwin |Steve Bryson |Andrea Lobo
While effective treatment is lengthening life and improving its quality, children with spinal muscular atrophy (SMA) type 1 often have abnormal spinal curvatures like scoliosis that require long-term care, a study highlights. “Novel therapies have made this [SMA] a treatable condition, resulting in increased life expectancy,” the researchers, all in the U.K., wrote.
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2 months ago | 
smanewstoday.com | Marisa Wexler |Ari Anderson |Helen Baldwin
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 Advisory Board. She hosted her beloved YouTube series, “Dose of DeAnn,” for seven years and created more than 170 videos. DeAnn passed away Jan. 21, 2025, at the age of 45 after a sudden illness.
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2 months ago | 
smanewstoday.com | Helen Baldwin |Marta Costa Figueiredo |Steve Bryson
I learned my vision needed assistance in fifth grade. Although I unwittingly squinted at the chalkboard, my report cards never indicated a problem. I was a model student because I adored my teacher, Mrs. Chandler. I didn’t want to disappoint my teacher parents, either. They never needed to prod me to do well; as a typical firstborn child, I aimed for perfection. Consequently, when annual vision screening in the nurse’s office revealed that I couldn’t see everything as I should, I was devastated.
