There’s nothing like finding a community where we belong

Every year while I was in high school, I went to a weeklong summer camp with my church youth group. It was my favorite week of the year because I felt like I belonged there more than anywhere else.

We played games, sang songs, stayed up talking all night, and laughed and cried a lot. I felt seen and known among people who shared my faith and passions. And I dreaded going back to what seemed to be a boring life, my stupid high school, and the shallow culture that surrounded me.

It really wasn’t that bad, but on the long drive home, I just knew I’d spend the next year pining for that experience again.

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Fast forward 20 years to October 2019, when my younger brother, Kevan, invited me to join him at Hutchmoot, a strange and wonderful weekend in Tennessee for artists, writers, musicians, and academics. It’s impossible to describe except that it felt very much like summer camp for creative adults.

The first night we gathered together, I thought my heart was going to burst. Once again, I experienced that instant, deep connection with a hundred kindred spirits who just got me in a way few people do. Saying goodbye at the end of the weekend felt a lot like leaving a youth group church camp. I didn’t want to leave, and I couldn’t wait to return.

Finding more of my people

Last summer, I attended the Cure SMA annual conference for the first time. Kevan and I were both diagnosed with SMA at an early age, and because we always had each other, we weren’t lonely. We had a handful of friends in our hometown with similar diagnoses as ours, but we never had the opportunity, nor did we particularly feel the need, to be connected with the broader SMA community. So, when I got to the hotel in Texas for the conference, I was overwhelmed by the number of power wheelchairs everywhere!

Not only that, but I became very aware of some physical similarities I had with the majority of wheelchair users around me: the way our eyes and eyebrows are especially expressive when we talk, how we deftly maneuver our chairs to efficiently pack them into elevators, and the fact that we had blankets tucked around our legs in the middle of June because the air conditioning was so frigid. “What a weird bunch of muppets we make when we’re together,” I thought in amusement. These were my people, too, in a different and unique way from my friends at church camp and at Hutchmoot.

I remember hearing from many people that the Cure SMA conference is their favorite week of the year. It’s where they feel the most at home: seen, loved, accepted, and celebrated. This is their family, and this is where they have purpose. I’m so glad that we have these places where we belong and where we feel safe and free to fully be ourselves. It does wonders for refreshing us and giving us the courage to keep going.

So I’ve been thinking about those people recently, as the flood of photos and updates from this year’s conference, held at the end of June and which I was unable to attend, begin to ebb away and people hesitantly resume their normal lives. Maybe you left the magical world of Disneyland to head home and do battle with Medicaid, or hash out a revision to your Individualized Education Program, or bravely face another surgery.

Life in the normal grind is hard, and living with SMA can sometimes feel unbearable. It doesn’t get easier, and it doesn’t go away. But maybe those special gatherings can give us hope and remind us that we’re not alone. I know only a couple of friends in my town who have SMA, but SMA isn’t my sole defining quality, and it isn’t the full sum of who we are.

In between summer church camps, I made friends at my school who loved to sing and play games, serve others, and talk about their faith. In between Hutchmoots, I was able to identify and connect with folks in my community who love the same books, music, and crafts that I do. And being at Cure SMA last year helped me have a deeper appreciation for those back home, abled and disabled friends of all shapes and sizes who love me and truly see all of me: my creative mind, my snazzy wheelchair, my compassionate heart, and even my expressive eyebrows.

I hope that my amazing peers with SMA are able to do that, too. I hope the conference reminds you that you aren’t alone and that you do belong. And as you get home, I hope you will look for that kind of loving community right where you live.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.