Recently, in the SMA News Today Forums, a handful of members shared that they were embarking on new treatment journeys with both Spinraza (nusinersen) and Evrysdi (risdiplam). Reading such posts makes me feel a level of happiness I don’t often feel for strangers on…
Columns
I could tell you this year has been difficult for me, and I’m certain you’d reply with a swift hitchhiker’s thumb and a comment to the effect of, “Yeah? Welcome to reality. Back of the line, lady.” A perfectly understandable response. To your point, I’ll quietly make my way to…
Oct. 6, 1997. My husband, Randy, and I snagged a last-ditch effort to save our baby Jeffrey from spinal muscular atrophy’s deadly vise: meeting with a pulmonologist who was trying gabapentin on another young child in North Carolina. We were desperately eager to learn whether or…
I looked at the faces on my computer screen and saw just a snippet of the SMA community. People from different locations, different cultural backgrounds, and with different types of SMA were gathered for a Cure SMA virtual book club, which I had…
For the longest time, winters were a joyful occasion. It wasn’t that I liked the snow, or the sickness, or the slog of self-isolation. I didn’t want to stay home for a third of the school year. I didn’t want to wrestle with long division and cellular anatomy all by…
I’m a groundhog. Well, symbolically, I’m a groundhog. I emerged from my burrow on Groundhog Day, 1986. I’m reminded of this each year my birthday rolls around, when my mom recollects her story about being in labor with me as the hourglass sands of Feb. 1 dwindled, and I…
The video game “Cyberpunk 2077” has become one of my go-to coping mechanisms. I know that’s an odd statement to hear from someone writing on a platform dedicated to disability advocacy, considering the backlash that video game developer CD Projekt Red has received due partly…
Well, 2021 has arrived, but we are still dealing with the ongoing ramifications of the previous catastrophe of a year. Those of us in disability communities remain in physical isolation, along with many others across the globe. Time goes on, but in many ways, it feels like it’s…
I didn’t have many friends growing up. Part of it was the disability. Part of it was the mental illness — social anxiety, depression, and a dash of trauma for good measure. And part of it was the desire to not be seen hanging out with “people like me.”…
Nearly a month into 2021, I think it’s safe to say we’re all glad to have left 2020 behind us. It certainly wasn’t an easy year. Its hardships likely will go down in the history books. Around the globe, we saw a devastating pandemic, raging wildfires, and a…
