I may have thrown a fit about genetic testing, but at the end of the day, it was easier than most things. The genetic counselor sent me the test in the mail. (I’m tired of COVID-19, but I will say I’m enjoying the ability to do pretty much everything…
In recent years, Disney has started a new trend of turning its classic animated movies into live-action remakes. In 2019, it released a reimagined “Aladdin.” Much of the story stays true to the original film from 1992, and any differences that do occur only serve to make the movie stand…
Once every few weeks, I’m reminded of my own mortality. A lot of folks dread their period. It’s a definitively unpleasant time between the cramps and the blood and the hormonal mood swings that evoke a hangry toddler. But it’s not the period that I dread. It’s the days —…
Evrysdi (risdiplam) at its approved and therapeutic dose does not lead to eye damage in children or adults with spinal muscular atrophy (SMA), data from extensive ophthalmologic monitoring of patients in its clinical trials — prompted by earlier safety findings in monkeys — show. These data support the therapy’s favorable safety…
Cure SMA is offering free personal protective equipment (PPE) packages to support spinal muscular atrophy (SMA) patients in the U.S. during the ongoing COVID-19 pandemic. Through the temporary program, called COVID-19 PPE Package, SMA households can receive shipped supplies of antibacterial wipes, antibacterial hand sanitizer gel, disposable…
Declines in lung function are steeper and quicker in children with spinal muscular atrophy (SMA) type 2 than non-ambulatory children with SMA type 3, matching changes seen in motor abilities in these two patient groups over time, an eight-year study of untreated children in a global SMA registry…
A newly identified small molecule able to cross into the brain — named TEC-1 — significantly eased disease severity and prolonged survival in a mouse model of spinal muscular atrophy (SMA), a study from Japan reported. TEC-1 was reported to work in ways similar to Genentech’s oral SMA…
Evrysdi (risdiplam) has been approved for the treatment of spinal muscular atrophy (SMA) in Brazil by the country’s National Health Surveillance Agency, known as ANVISA. The Brazilian approval came within seven months of Roche’s original submission, with the country becoming the second to approve the medicine,…
If you’re a member of the SMA News Today Forums, you might know that I trialed the JACO robotic arm a few months ago. When I heard that Numotion was servicing my area of the U.S., I decided to give it a shot. Why not, right? I’m already…
Let me set the scene. It’s 9 a.m. I’ve been awake since 6. My poor, sweet dad has been up since 5:30. We’ve been preparing for this gut punch of a medical appointment for weeks, but even so, neither of us are particularly thrilled with our lives right now.