Columns

“A hero — not the hero we deserved, but the hero we needed.” This line from a Batman movie aptly describes the life and legacy of Judy Heumann. The prominent disability rights activist, who died March 4 at the age of 75, remains a hero in every…

If there’s one thing my dad and I can agree on, it’s that mornings are the worst. My mom, on the other hand, is a veritable morning person. She wakes up energized and ready to conquer the world. By the time I drag my sorry butt out of bed,…

I still remember exactly what I was doing when news broke that Evrysdi (risdiplam) had been approved by the U.S. Food and Drug Administration (FDA) in August 2020. Up until that point, it had been a pretty ordinary day. It took only a moment to become so…

Among the many SMA symptoms I live with every day, fatigue has permanently staked out its territory at the top of the list. I am perpetually tired. There are days when my fatigue gets the best of me, but more often than not, I’ve learned to live with it.

Hello, March! Here in the North Carolina mountains, daffodils optimistically poke through the ground; impatient ones bloomed last week. Trees are budding, and flower beds are sporting a bit of green. Forager bees are gathering pollen for the baby bees. With all this popping up and out, you’d think winter…

The HBO series “The Last of Us” takes place in a dystopian world where zombie-like creatures roam the Earth 20 years after a mass infection wreaked havoc on humanity. Its main characters, Joel (Pedro Pascal) and Ellie (Bella Ramsey), travel across a post-apocalyptic America in an attempt to…

You know what they say. If something isn’t working, try something else. It’s perfectly logical when you think about it. Why sink time and energy into something that isn’t getting you results? But I’ve found that it’s hard to disinvest from something that, for all intents and purposes, should be…

It’s hard to say exactly what impact rare disease awareness has had on our world. What has it taught us? Those of us with SMA and other rare diseases are keenly aware of the benefits that years of advocacy, research, fundraising, and education have brought to our disability communities…

As many readers of this column may know, SMA is considered a rare disease. But what some may not know, or simply overlook, is that people with SMA don’t share the exact same experiences. When I think of my experiences, I think of math class —…

Rarely have I not received the best treatment available for my SMA. Doctors and nurses have been proactive in giving me aggressive care to prevent me from getting sick. But when I do, my medical team, including my mom, is aggressive enough in its care to prevent me…