Difficulties with biting and fatigue while chewing are common among patients with type 2 and type 3 spinal muscular atrophy (SMA) who are unable to walk unassisted, a Dutch study reports. The findings highlight the need for interventions to help maintain muscle strength in the jaw of these patients…

It’s not just the closeness, the sudden proximity to people other than my parents. It’s not just the dearth of mask mandates. (You’ll pry mine from my stone-cold, long-dead hands.) It’s not even the sense of possibility — for the first time in over a year, I can go places,…

One of my favorite films is “Rushmore,” a coming-of-age comedy from one of cinema’s most imaginative directors, Wes Anderson. “Rushmore” tells the story of quirky teenager Max Fischer, an ambitious playwright who prioritizes everything but his academics. He joins every…

Poorer oxygen update in muscle cells and greater fatigue was evident among ambulatory spinal muscular atrophy (SMA) patients relative to healthy people in an exercise-based study, suggesting that problems in cell energy production play a role in this disease. A better understanding of the…

Treatment with the molecule 4-aminopyridine (4-AP) failed to improve the motor function, endurance, and muscle strength of spinal muscular atrophy (SMA) type 3 patients who are able to walk, according to results from a small Phase 2/3 clinical trial.  Findings from the trial…

Spinraza significantly eased fatigue in adults with spinal muscular atrophy (SMA) after six months of treatment, as measured by the patient-reported Fatigue Severity Scale (FSS), a small study found.  But this relief was no longer statistically significant after 10 months, its…

When I began my journey with Spinraza (nusinersen) in November 2017, I had little more than an inkling about what to expect. At the time, I was more concerned with the procedure than the potential benefits. The idea of letting a radiologist stick…

Since I started receiving my Spinraza (nusinersen) treatments in November 2017, my energy level has skyrocketed. Often, I don’t even realize just how good I feel now. Then I think back to when I was a teenager, struggling with sleep apnea…

Driving home from Boston one evening, I witnessed the sky paint a vibrant sunset as we cruised down the highway. Bright pinks and oranges swept across the view from my window as the radio blared through the speakers. A dear friend was in the driver’s seat, and as the sky…

In January, I self-published my debut collection of poetry titled “Witchcraft and Monsters.” In case you think that being an author is a “very chill job” (many believe it is not a job at all), I’m here to tell you that it is not. Yes, 95 percent…