The U.S. Food and Drug Administration (FDA) has approved a high-dose regimen of Spinraza (nusinersen) — one that allows patients to receive consistently higher doses of the therapy after a shorter initial treatment loading phase — for…
Nearly anyone that knows me knows that pasta has been my lifelong favorite food. We stock a variety of shapes and flavors in the pantry so I always have different options to choose from. Among them are single serving, microwaveable…
Children with spinal muscular atrophy (SMA) showed trends suggesting that nutritional status may be linked to motor function, according to a study in Poland that tracked 38 children over one year. Researchers found…
Some losses don’t give you time to prepare. The sudden passing of Eric Dane, a Hollywood icon who couldn’t escape the ugly grip of amyotrophic lateral sclerosis (ALS), is one of them. It’s the kind…
March seems to stretch to infinity, but one bright spot is the promise of spring. It’s also National Reading Month, in honor of Dr. Seuss’ birthday. Our daughter-in-law, Jill, is a literacy specialist at our…
A combination of approved treatments, alongside early physical therapy, was successfully deployed to help treat a boy with spinal muscular atrophy (SMA) type 0 in Japan. Type 0 is the most severe…
I’m getting ready for a trip to see my dear friend Christi get married this month. It’ll be the first time I meet her soon-to-be-husband in person, and from what she’s shared about him, I am so excited for…
Even when treated early with disease-modifying therapies (DMTs), infants and toddlers with spinal muscular atrophy (SMA) do not develop swallowing skills at the same pace or to the same level as healthy children. That’s according…
Note: This column describes the author’s own experiences with Cymbalta (duloxetine). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Every morning, my caregivers present me with…
Genentech will not advance emugrobart (GYM329) into Phase 3 development, after early results from a clinical trial testing it in combination with Evrysdi (risdiplam) in people with spinal muscular atrophy (SMA). According to a…
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