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The Truth About SMA Awareness Month

Not everyone likes it. A while back, I was talking to a friend in Singapore who also has SMA. She mentioned that although she wanted to post something for SMA Awareness Month, she was struggling to balance her desire to advocate and raise awareness with her desire to,…

A Damselfly Dances in the Face of Ableism

As we drove into the parking lot adjacent to a tried and true trailhead, the hollow moon had climbed into the bluest corner of the sky. Drifting thunderheads were perched atop the distant tree line like pensive giants.  “Beautiful day for a hike,” I said to my companion,…

Storms and SMA: The Opposite of a Love Story

When it comes to storms, I’m a dog with high levels of anxiety. Don’t get me wrong, I love the rain. A gentle rainfall is the perfect backdrop to at least half of my favorite activities. But storms are a different story. Storms are thunder and lightning and…

Why I’m Sticking to Spinraza for Now

It’s officially August, which is kind of hard to believe. Nonetheless, many people in the SMA community have anticipated this month for quite some time. Not only is it SMA Awareness Month, but it is also when the U.S. Food and Drug Administration was expected…

Facing My Fear of Surgery Through British TV

I was a bit of an Anglophile in high school. I was obsessed with anything produced by the BBC — “Doctor Who,” “Sherlock,” “Merlin,” even the 2006 retelling of “Robin Hood.” It didn’t help that my best friend lived in Scotland and often spoke in British endearments. I was…