I’ve been through a lot with SMA. I thought I had experienced everything, but on March 20, I was proven wrong. It was a frightening shock. That morning, my nurse was dressing me while I was in bed, as usual. My mom also happened to be in…

For a video games journalist, I haven’t played many video games recently. Mostly, the absence of gaming in my life isn’t my fault. My laptop is almost four years old, and it’s quite determined to remind me of its age. If I were to anthropomorphize it, I would say it…

Targeting a stress-activated signaling pathway may offer a new way to treat spinal muscular atrophy (SMA), either on its own or in combination with existing therapies. Researchers found that blocking the c-Jun N-terminal kinase (JNK) pathway with medications significantly reduced disease severity and extended survival in a mouse model…

I am an adult with SMA who lives independently, so when people learn that most of my caregiving happens through 20-plus volunteer friends, they tend to be a bit flabbergasted. “How?” is the common and predictable question. I’m not someone who loves how-to articles or self-help books, because I…

When it comes to sleep studies, I mainly remember orange juice. Don’t ask me why. I was young then, around 8 or 9, so I have to assume the technicians were trying to bribe me or something. My last study was in 2002, so I was a little nervous when…