Social mixers usually aren’t for me, but I took a risk and it paid off
I don’t talk to my ex anymore. For the sake of this column, I will have to let her know about it as a courtesy. But as far as a daily choice…
Columns
Migraine drug may protect motor neurons in SMA: Mouse study
The migraine medication flunarizine may help protect nerve cells in spinal muscular atrophy (SMA) by correcting abnormal levels of microRNA, small molecules that help regulate gene activity. Researchers identified widespread microRNA abnormalities in cells and in…
Friendly competition makes my caregivers strive for excellence
My caregiver held the toothpaste tube in both hands, meticulously squishing it flat from the bottom all the way up to the nozzle. I laughed: “It’s OK, I have a whole new tube ready to go in the closet.”…
SMA specialists face high rates of burnout, leading to delayed care
Healthcare professionals who specialize in managing spinal muscular atrophy (SMA) are prone to putting off tasks related to patient care, likely because they are stressed and exhausted, a study found. A research team in Spain…
A seasonal treat offers a reprieve from my swallowing difficulties
Ice cream wasn’t always one of my favorite treats. Don’t get me wrong, I loved it, but it wasn’t one of my go-tos when I wanted something cold or sweet. I think SMA is part of…
Parents of children with SMA report gaps in caregiving support
Parents of children and young adults with spinal muscular atrophy (SMA) reported significant unmet needs, including respite care, mental health support, and community connection, according to an interview study. Three-quarters of the parents also expressed interest…
Why I’m dedicated to providing support to others in the SMA community
It’s been almost four months since my husband, Randy, and I made a hasty run to Charleston, South Carolina. Our mission was to adopt a dog our daughter, Katie, had found at a nearby rescue.
Evrysdi stabilized motor, breathing function in adults with SMA
Treatment with Evrysdi (risdiplam) generally stabilized motor and respiratory function for up to 2.5 years in adults with spinal muscular atrophy (SMA), according to a real-world study in Slovenia. The study included 11 adults with SMA…
NISE-Stim therapy supports posture, mobility, and breathing in SMA
As 3-year-old Evie Bradford splashes in a shallow pool, her family cheers when she dog-paddles with all four limbs, her head bobbing above water. Less than a year ago, this little girl with spinal muscular atrophy (SMA) type 1 loved being in the water, but lay passively while…
Recent Posts
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- MDA Engage: Keynote speaker Mindy Henderson redefines the impossible
- Potential treatment in the works for 3 siblings with ultra rare form of SMA
- SMA treatment was once a pipe dream. Now, we have 5 options.