Video Blogs

Imagine there’s a Singaporean girl with SMA. She’s exhausted by chronic neuropathy, medication, and feeling like she’s worth less than her able-bodied peers. So exhausted, in fact, she struggles with writing about her disability for SMA Awareness Month. “Google is free. Why should I have to make myself uncomfortable and…

For as long as I can remember, I have participated in the SMA community in some way. Whether it was opening a lemonade stand as a little girl, participating in a research study, or running a nonprofit organization as an adult, I have always been committed to making…

So you’ve badly hurt another person’s feelings, and the guilt they’re making you feel is burning hot. You know how that goes, right? Once, a friend was so steaming mad about a mistake I made that you could cut the atmosphere’s tension with a knife. I…

I’ve dreamed of cures. Miracles that occur in the blink of an eye. One minute, I’m sitting in my wheelchair, and the next, I’m standing, walking, running. I’m wobbly on my feet, of course, and crying, because everything has changed, and I’m probably overwhelmed by the newness of it all…

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…

In the beginning of the COVID-19 chaos, I tried to stay informed of updated health-related warnings and recommendations. I soon waved the proverbial white flag to ward off permanent whiplash from keeping abreast of the ever-changing information. During this pandemic pandemonium, my current primary daily…