Ryan Manriquez shares his favorite story from life with spinal muscular atrophy (SMA), recalling his first Cure SMA conference at Disneyland and the joy of meeting others face to face. He reflects on humor, belonging, and the strength found in rolling through life together with community.
Transcript
My favorite funny story of living with SMA naturally has to do with our community. Every year, Cure SMA — which is the nonprofit for spinal muscular atrophy — hosts their annual SMA conference every year.
My first conference was in 2019 at Disneyland, and that was a really wonderful experience connecting with my community for the first time. Other teenagers and adults that I had seen on Instagram, right, from all over the country, but never had the opportunity to meet in person. It was just a wonderful experience.
But the funniest thing to come out of that was just, I think, the scene it must have been for so many people in Disneyland — seeing, you know, 20, 30, 50, even 200 people, wheelchair users with SMA, just rolling around Disneyland.
And I remember making a joke to one of my friends, “You know, this kind of looks like ‘Sons of Anarchy’ — but if we were all in wheelchairs.” Kind of like a biker gang, but with wheelchairs.
Just thinking about how cool it was that we were all riding with each other and following along together. Our community is just funny. And I love us and all the things that entangles us with living with SMA.
