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When I was a little girl, my parents would take my brother and me to Cape Cod, Massachusetts, for family vacations. Those memories have always been so dear to me. We’d pack the car full to the brim with bathing suits, beach toys, and, of course, all my…

The COVID-19 pandemic made it more difficult  for many people with spinal muscular atrophy (SMA) to access needed healthcare, a study highlights. At the same time, the pandemic prompted new approaches to facilitating care and running clinical trials, such as the widespread adoption of telehealth, which brings health…

When my back is to the wall and a crisis is coming to a head, that’s when my life really gets interesting. There are no more long waits to see if something will happen; instead, something has to happen. The way I see it, human intervention usually occurs, but…

Somehow we’re fast approaching June’s final days! As summer continues, plenty of memories dance in my head. Particularly eventful, to put it mildly, was 1997. Our summer that year commenced in mid-May, when our third baby, Jeffrey, arrived two weeks ahead of schedule. As my volunteering stints in the…

Last year, I had the incredible privilege of interviewing Corinne Busche, the current game director for Dragon Age’s fourth entry, “Dragon Age: Dreadwolf.” Busche is someone in the video games industry I’ve come to greatly admire for her kindness toward fans of the franchise and her enthusiasm about…

The U.S. Food and Drug Administration (FDA) has given Alcyone Therapeutics the go-ahead to start a clinical trial testing ThecaFlex DRx, its implantable system for repeat use of Spinraza (nusinersen) to treat people with spinal muscular atrophy (SMA). The pivotal trial, called PIERRE (NCT05866419), will be…

As a kid, I organized my hundreds of action figures in buckets. I kept them displayed on a wooden shelf next to my bed, and I knew the exact location of each figure and accessory. Anytime the figures were out of my reach, I relied on the patience…

Researchers have developed new patient-derived cell models of spinal muscular atrophy (SMA) caused by SMN1 mutations as well as the more rare spinal muscular atrophy with respiratory distress type 1 (SMARD1). The cells exhibited structural abnormalities consistent with SMA which could be rescued with gene therapies. Scientists believe the…

I often daydream about the kind of person I’d be if I didn’t have SMA. It’s not so much fantasizing about the physical abilities I’d have, but rather the characteristics that would define me. Would I still be empathetic toward others? Would I still choose resiliency in the…

It didn’t take long for my mom — who, in her own words, is not “retired” but “reliving” — to take advantage of her surplus of free time. Days after settling into the next stage of her life, she started me on a new exercise regimen: regular 15-minute…