Celebrating the people who got me to my 28th birthday
Today is my 28th birthday! As anyone in the SMA community knows, age is not a privilege guaranteed to those of us living with the disease, so every birthday — and every individual day —…
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Turning 30 with SMA brought up unexpected feelings
When I was younger, the idea of me turning 30 felt like a distant dream for me and my family. Living with spinal muscular atrophy (SMA), I was constantly reminded by doctors, statistics, and even the quiet fears…
Golf and other hobbies of mine that tend to surprise people
The other weekend, I was invited to a golf tournament. It was a gorgeous day, and I rarely turn down an invitation for a good time, so naturally, I channeled my inner Rory Gilmore,…
Golf and other hobbies of mine that tend to surprise people
The other weekend, I was invited to a golf tournament. It was a gorgeous day, and I rarely turn down an invitation for a good time, so naturally, I channeled my inner Rory Gilmore,…
I’m learning nonattachment in my course on world literature
Words always come to me when I need them. Lines by Ada Limón, Anne Boyer, and Marie Howe act as life preservers, guiding me back to my center. When life gets tough, I always find myself at…
I’m working hard to overcome my current obstacles
Everyone experiences times when they feel overwhelmed by problems to fix, regardless of whether they have SMA, as I do. My life right now is a work in progress, and there’s nothing wrong with that. I’m currently addressing…
I’m working hard to overcome my current obstacles
Everyone experiences times when they feel overwhelmed by problems to fix, regardless of whether they have SMA, as I do. My life right now is a work in progress, and there’s nothing wrong with that. I’m currently addressing…
Why actors with SMA deserve greater media representation, part 1
First in a series. Maybe it (sadly) goes without saying, maybe it doesn’t, but if you Google “spinal muscular atrophy actor,” you won’t find a single SMA patient with a long filmography filled with recognizable projects.
Why actors with SMA deserve greater media representation, part 1
First in a series. Maybe it (sadly) goes without saying, maybe it doesn’t, but if you Google “spinal muscular atrophy actor,” you won’t find a single SMA patient with a long filmography filled with recognizable projects.