I give back — with a little help from my friends
I love to volunteer. If I see a need that I can meet, I am eager to jump in. And if someone asks me to help with a project or service, I am quick to say…
Columns
I have a newfound appreciation for my clinic at Gillette Children’s
On a perfectly mundane February afternoon, my mom and I drove to downtown St. Paul, Minnesota. It’s a new ritual now that I’ve transitioned most of my care to Gillette Children’s Specialty Healthcare. Every six…
SMA tied to organ-specific redox imbalances in mouse study
Spinal muscular atrophy (SMA) is associated with multi-organ changes in a protective protein modification that helps guard cells against molecular damage, according to a study in mice. The researchers also found that treatment with antisense oligonucleotides —…
New study finds muscle stem cells are key to treating SMA
Low levels of SMN protein in muscle stem cells (MuSC) — specialized cells that help sustain muscle growth and regeneration — may contribute to the loss of motor neurons, the nerve cells that control movement and…
The blessing and burden of relying on medical machines
There aren’t many guarantees in life, but if you live in New England, you can always be sure there will be a winter nor’easter. With these storms come snow, wind, and power outages. The local news outlets remind…
I’m not proud of it, but sometimes I miss being in the hospital
I’m a lot of people’s favorite something. That’s not bragging, it’s just a statement of fact. Ask my mother who her favorite child is, or some of the nurses at my usual hospital’s neurology…
Evrysdi shown to stabilize motor, lung function in adults with SMA: Study
Treatment with Evrysdi (risdiplam) may modestly improve arm function for adults with spinal muscular atrophy (SMA), a new study from the Czech Republic and Slovakia indicates. Findings suggest that adults with SMA generally…
How the Winter Olympics can remind us of the power of imagination
My younger brother, Kevan, and I were both diagnosed at a young age with SMA, so we grew up with power wheelchairs and powerful imaginations. We lived most of our childhood in our…
Children with SMA, their caregivers struggle to get quality sleep: Study
Children with spinal muscular atrophy (SMA) often struggle to get a good night’s sleep — and their caregivers also commonly report feeling sleep-deprived, according to a new study. “Sleep problems have potentially critical consequences for…
For SMA children, early start to therapy may help with swallowing, eating
Children with spinal muscular atrophy (SMA) who start on a disease-modifying therapy (DMT) — four have been approved in the last decade — before developing symptoms are usually able to feed by mouth,…