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,…
Community Perspectives
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.
Driving Miss Connie: Trips in my van are always an adventure
One of the most common questions new friends ask me is: “Do you drive?” When I’m feeling snarky, I refer to my wheelchair and respond: “All the time.” But I know they are actually wondering if…
Driving Miss Connie: Trips in my van are always an adventure
One of the most common questions new friends ask me is: “Do you drive?” When I’m feeling snarky, I refer to my wheelchair and respond: “All the time.” But I know they are actually wondering if…
Overcoming challenges leads to an ocean of opportunity
I’ve long dreamed of visiting the Georgia Aquarium in Atlanta to see their famed whale sharks. Something about the gigantic yet peaceful sea creatures tugs at my soul in a way that made me crave seeing them…
Recent Posts
- The sustained intensity of indelible memories of SMA, and of Jeffrey
- SMA culture is changing, but love and joy are still the best treatment
- Preclinical study finds antidepressant may boost SMN
- An invitation to the community to experience joy together
- SMA Europe online tool helps patients find clinical trials