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,…
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…
Recent Posts
- Almost all kids given early Evrysdi walking 3 years later: Trial data
- 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