Why we should listen to SMA patients about Evrysdi

Note: This column describes the author’s own experiences with Evrysdi (risdiplam). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “The drug likely won’t be effective on you. You’re in your 20s, and you’ve deteriorated to the point where you…

Babies’ Motor Function Improves After 2 Years on Evrysdi

After two years of treatment with Evrysdi (risdiplam), most babies with spinal muscular atrophy (SMA) type 1 in the FIREFISH clinical trial are still alive without a need for permanent ventilation, and many of the youngsters are showing continual improvements in motor development. The results were published in …

Advocates Step Up to Mark SMA Awareness Month in US

For most of his life, Jose Flores avoided interacting with the spinal muscular atrophy (SMA) community because he felt out of touch with it. An SMA type 4 patient, Flores didn’t need a wheelchair until he was 22, and found it difficult emotionally to see children who weren’t…

The Importance of Paradises in a World on Fire

A single lyric keeps ringing in my head from Fletcher’s latest single, “Her Body Is Bible.” It goes, “Hold on tight, when the world gets hard, this s**t’s like paradise.” The song appears pretty straightforward at first blush. The lyrics and the imagery are simple, attempting to reclaim religious…