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Treatment with a high-dose regimen of Spinraza (nusinersen) was shown to safely improve motor function in children with spinal muscular atrophy (SMA) in the Phase 2/3 DEVOTE clinical trial. Most patients who switched from the…
If you’ve read at least a few of my columns, you know that I hold on tightly to hope. It’s what keeps me plowing through the rough terrain of problems and crises, as my faith tells me that, one…
The case of a 51-year-old man ultimately diagnosed with spinal muscular atrophy (SMA) type 4 is believed to mark the first time this form of the rare genetic disease has had as its main…
“Are you kidding me?!” Mandy’s wide eyes and dropped jaw expressed her genuine shock. Chelsea and I were discussing our recent frustrations with inefficiency and a lack of dignity in disability services, such as hospital care, wheelchair repair, and insurance policies. Chelsea…
Women with spinal muscular atrophy (SMA) can experience successful pregnancies and give birth to healthy babies when supported by specialist, team-based care, according to a U.K. case series. The report followed eight pregnancies in six women…
A rapid test using zebrafish was able to show that two children identified by genetic testing as possibly having spinal muscular atrophy (SMA) did not actually have the progressive disease, according to a new study.
It’s been almost a year since I moved into my new house, and I’m still working to get everything the way I want and need it. I’ve always loved warm temperatures. As long as I stay hydrated, the…
SMA doesn’t usually make headlines unless the person affected is famous. When Jesy Nelson, former lead singer of Little Mix, shared that her newborn twin daughters had been diagnosed with…
My husband, Randy, and I had never considered leaving our hometown of Fort Worth, Texas. That all changed when Randy received an unexpected coaching offer in South Carolina. With little time to prepare for such a…
The Lights, Camera, Action! attraction at Universal Studios Singapore was just as I remembered it. Without missed or delayed cues, fans blew harsh winds, sprinklers rained, sound effects thundered, lights flashed, and a ginormous boat barged…
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