Columns

The Christmas spirit eluded me in 1997. Our baby Jeffrey, diagnosed with SMA that summer, had snagged his wings that November. Needing to find something positive, I focused on why I should be thankful. Jeffrey was in heaven, free from the ravages of SMA. I…

Children with spinal muscular atrophy (SMA) type 2 and 3 have lower health-related quality of life (HRQoL) compared with healthy youngsters, but scores are similar for both patient groups, a new study reported. While disease type was not found to impact HrQoL, some health-related quality of life measures…

As I write this column, 2022 is almost complete in the book of memories. I must admit that with two surgeries this year, many memories from the year aren’t my favorites. Truthfully, 2022 is ending on a wonderful high note for me, but that’s a story for another…

Winter in Singapore isn’t like winter in many other countries. Not much changes in terms of the weather. It might be cooler on days when the Fates are kind, but for the most part, conditions stay hot and humid. We don’t get glittering blankets of snowfall or sheets of…

A technique called bioelectrical impedance analysis (BIA) can be used to measure body composition in people with type 2 or 3 spinal muscular atrophy (SMA), a new study reports. The study, “A comparative analysis of body composition assessment by BIA and DXA in children with…

I could tell it was going to be a bad day. I woke up to an overdraft notice from my bank, which is never a good sign. Then I realized something was wrong with my phone. I’d updated it the day before, but hadn’t used it since then, so…

Raft Digital Therapeutics has launched a demo version of Cloud Bazaar, a therapeutic video game that promotes physical activity and exercise in children with spinal muscular atrophy (SMA). Developed in partnership with Biogen Canada, the game aims to promote exercise adherence by turning physical activities into games…

Last month, I sat at the kitchen table intently wrapping a birthday present as the sunlight began to fade. My home health nurse sat beside me in the dwindling light, with a piece of tape on her extended finger for when I would need it. “I…

The U.S. Food and Drug Administration (FDA) has given NMD Pharma the green light to conduct a Phase 2 trial of its oral therapy NMD670 in people with spinal muscular atrophy (SMA) type 3. The upcoming clinical trial aims to evaluate the efficacy, safety, and tolerability…

I once knocked over our Christmas tree when I was 3 years old. To this day, I’m not proud of it, and frankly, I’m still a little traumatized by it. I was simply trying to get a good view out the bay window to see our…