On a special night, I’m heading back to dance, cheer, and yes, shine
For the past two years, my friend Pam and I have attended Night to Shine, a special prom event held in cities around the world on the same night, created by the Tim…
Columns
Nerve signals can help track Spinraza response in SMA kids: Study
The strength of nerve signals to muscles may serve as a marker of disease severity, and as a means to track responses to Spinraza (nusinersen) treatment, in children with spinal muscular atrophy (SMA), the…
High-dose Spinraza safely boosts motor function in SMA children: Data
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…
My home health nursing shortage was suddenly resolved
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…
Man with SMA type 4 shows rare fake muscle enlargement in calf: Report
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…
When friends become disability advocates
“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 SMA can have successful pregnancies with team-based care
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…
Test using zebrafish model helps doctors rule out SMA in 2 infants
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.
Temperature regulation is challenging, but vital with SMA
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…
When an SMA diagnosis makes a headline — and when it doesn’t
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…
Recent Posts
- SMA does not define us or limit our dreams
- Magnetic rod surgery safe, effective for kids with SMA type 1: Study
- How voice-to-text technology improved my daily life with SMA
- Home therapy improves life quality for young people with SMA on Spinraza
- How Children’s Hospital Colorado uses gaming to support SMA care