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1 month ago | 
smanewstoday.com | Alyssa Silva |Steve Bryson |Sherry Toh |Brianna Albers
Every now and then, memories from my childhood hit me in the most unexpected ways, which is surprising because I don’t remember much from years past. Alas, my parents were cleaning out our basement recently when they came across a large trash bag filled with some of my stuffed animals. Right on top was a stuffed horse I hadn’t seen in decades. The memories it still held sucker-punched me right in the gut and transported me back in time to a moment when life felt so heavy.
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1 month ago | 
smanewstoday.com | Brianna Albers |Lindsey Shapiro |Alyssa Silva |Sherry Toh
Even with SMA, my checkups have, for the most part, become pretty routine. Every six months, I drive 30 minutes to my nearest specialty clinic. While there, I see various doctors, each with their own unique vibe. My neurologist catches me up on all the books he’s read recently. My complex care doctor puts me at ease with his sunny smile and easygoing demeanor. My wheelchair guy (for lack of a better term) jokes good-naturedly with my dad about manly things like nuts, bolts, and Allen wrenches.
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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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Jan 8, 2025 | 
smanewstoday.com | Katherine Poinsatte |Brianna Albers |Marisa Wexler |Lindsey Shapiro
A combination of a ready-to-use SMN protein and an experimental treatment targeting the SMN2 gene, which works in a similar way to Spinraza (nusinersen), eased abnormalities in motor neurons derived from a spinal muscle atrophy(SMA) patient, researchers report. The addition of the protein, raising SMN protein levels (expression), in combination with an SMN2-targeting therapy was more effective than either of those approaches alone, the team, which created this full-length protein, noted.
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Dec 30, 2024 | 
smanewstoday.com | Brianna Albers |Alyssa Silva |Helen Baldwin |Margarida Maia
Four must be my unlucky number, because the worst years of my life have all ended in four: 2014, the year of major depression, and 2024, the year of suck. (I’m sure 2004 was bad, too, given that I’d just undergone a spinal fusion the year before. Thankfully, I don’t remember much of it.)Still, I find myself leaning toward gratitude. There’s frustration, of course, and despair (another year gone by? Does time ever stop?), and a whole lot of dread for the winter to come.
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Dec 25, 2024 | 
smanewstoday.com | Helen Baldwin |Kevin Schaefer |Brianna Albers
“Wicked” is the musical movie superstar of the moment. I loved “The Wizard of Oz” growing up, and while I haven’t seen the wildly popular adaptation on stage or screen, it’s impossible not to know at least some of the music. Stephen Schwartz, composer of both the score and lyrics for “Wicked,” hit the bull’s-eye with “For Good,” a colossal hit:“I’ve heard it said/ That people come into our lives for a reason/ Bringing something we must learn.”They don’t always stay long.
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Dec 9, 2024 | 
smanewstoday.com | Brianna Albers |Katherine Poinsatte |Steve Bryson |Ana Pena |Ana Peña
If you have SMA or care for someone with the disease, you’ll know what I mean when I say we get sweaty. At first I thought it was just me, but then I read that folks like me have sweaty palms. This moment was one of those that, in hindsight, transformed my understanding of SMA. I wasn’t alone anymore! Something I thought was a personal problem suddenly no longer was. Of course, the problem itself didn’t go away. I still had sweaty palms.
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Dec 9, 2024 | 
smanewstoday.com | Margarida Maia |Lindsey Shapiro |Brianna Albers |Helen Baldwin
Gratitude and support from family and healthcare staff can help people with spinal muscular atrophy (SMA) feel more positive, stay motivated, and plan their lives better, a study found. Programs that focus on gratitude could help patients improve their mental health and help them cope with their disease more effectively, according to the researchers, who explored how young and middle-aged patients experienced gratitude while hospitalized.
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Nov 20, 2024 | 
smanewstoday.com | Helen Baldwin |Halsey Blocher |Brianna Albers
I consider myself an optimist, at least most of the time. Life has hurled more than a few lemons our way over the years; thankfully, I like lemonade. In 1997, when my husband, Randy, lost his job mere weeks before our third baby’s due date, I felt like we’d been pummeled with baskets of lemons. It turned out to be just a warmup. The arrival of our sweet boy, Jeffrey, on May 18 was two weeks early.
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Nov 19, 2024 | 
smanewstoday.com | Kevin Schaefer |Steve Bryson |Brianna Albers |Katherine Poinsatte
I was always a “Star Wars” acolyte, but I became interested in the world of the “Star Trek” science fiction franchise when I was in high school. Whereas “Wars” is a giant space opera that takes place in the distant past with characters from a faraway galaxy, “Trek” imagines a future for humanity in which progress and exploration are defining characteristics. From the start of the original series, the members of the starship Enterprise outlined their mission via Capt. James T.
