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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 | Jasmine Ramos |Halsey Blocher |Ari Anderson |Kevin Schaefer
When I close my eyes, I see the world as it should be — a place where accommodation isn’t something to fight for; where people with disabilities don’t have to plan every step, hoping the next doorway isn’t too narrow, the next curb isn’t too high, and the next space isn’t too crowded. In my dream world, barriers don’t exist. But that’s not the world I live in.
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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 | Patricia Inacio |Halsey Blocher |Andrea Lobo |Lindsey Shapiro
Disease-modifying therapies (DMTs) may help lower the risk of children’s bone fractures among young patients with spinal muscular atrophy (SMA), a study by U.S. researchers suggests. “Drug therapy led to a decrease in fracture occurrence,” the scientists wrote, noting that “patients on treatment had fewer fractures compared [with] pretreatment.”However, the use of DMTs did not normalize bone density among patients with low bone mineral density (BMD) before treatment, the data showed.
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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 | Jasmine Ramos |Kevin Schaefer |Halsey Blocher |Alyssa Silva
A few weeks ago, my mother injured her foot, temporarily limiting her mobility. As she struggled to get around, relying on others for assistance, she looked at me and said, “I never realized how hard this is.” That moment stuck with me — not because I was surprised, but because she got a small glimpse into my world for the first time. Living with spinal muscular atrophy (SMA), I’ve faced mobility challenges my entire life. While my mother’s injury will heal, my condition is permanent.
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2 months ago | 
smanewstoday.com | Margarida Maia |Halsey Blocher |Andrea Lobo |Steve Bryson
Measuring the amount of gray matter in the spinal cord could help doctors track spinal muscular atrophy (SMA) over time and see how well treatments are working, according to a study that found shrinking gray matter was tied to weaker muscles and worse motor function.
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Jan 17, 2025 | 
smanewstoday.com | Halsey Blocher |Lindsey Shapiro |Sherry Toh |Kevin Schaefer
It takes a rather large team of specialists and various medical professionals to help manage my care alongside me and my mom, who’s my primary caregiver. That means I have to attend lots of doctor appointments. I’d like to tell you how many of those appointments and medical meetings I have on average each year, but I quickly lose count. Although I spend much more time with my medical team than healthy people do, that’s just routine for those of us living with SMA.
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Jan 13, 2025 | 
smanewstoday.com | Brianna Albers |Steve Bryson |Halsey Blocher |Katie Napiwocki
Let me explain something called “pee math.”I was familiar with the concept, but didn’t realize it was a common experience in the SMA community until a colleague brought it up. It goes like this: When boarding a flight, you calculate how much liquid you can drink before takeoff without it making you need to go to the bathroom in the air. Pee math gets exponentially more difficult the longer you’re on board. How do you go 10, 11, 12 hours without going to the bathroom?
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Dec 20, 2024 | 
smanewstoday.com | Halsey Blocher |Kevin Schaefer |Sherry Toh
Have you ever dreamed of being a princess (or a prince)? I think most of us have, adults included. I’ve always been a Disney fan, and it has no shortage of princesses to choose from. Each one is unique, so it’s usually easy to find at least one you can relate to. I’ve found connections with Belle’s love for books, Moana’s bond with the sea, a courageous song by a modern depiction of Jasmine, and the empathetic heart they all share.
