Last summer, I attended One Rare Adventure, which is an adaptive camping experience for young adults (18-35) living with rare diseases hosted by the nonprofit One Rare. We camped at a site on the edge of Lake Superior and went on a couple kayak trips on the lake. I joined as a volunteer and as a sort of beta-tester for the concept of the camp, as it was the first time the organization had hosted it. (I mentioned it in my 2022 wrap-up post.)
One Rare was started by a mother and her adult son living with Duchenne muscular dystrophy. And in fact, that mother has two sons living with Duchenne as well as a third son who is his brothers’ caregiver; so, our camping trip was a bit of a family affair. At times, I felt like I was crashing their family vacation!
Fast forward to just a couple weeks ago when I had the pleasure of attending One Rare Experience—another camp-like program that places an emphasis on personal development, education, and peer support (and dials down the adventure aspect that comes with camping, kayaking, and watching your guide accidentally set his shirt on fire). It was held at Bridgewater State University (outside of Boston) and had over 20 attendees.
While One Rare Adventure was fun, One Rare Experience was magical. When I saw the agenda, I was worried there would be too much down time between the fantastic sessions on organization, storytelling, advocacy, resume writing, and dating (to name just a few), but boy, was I wrong! Instead, the down time created an environment for lively conversations and meaningful connections that were already becoming friendships and the spokes of a robust support network, with One Rare as the hub.
In the evenings, there was a comedy showcase, karaoke, and games. My favorite was playing Quiplash on Jackbox as a group. I’m still laughing at some of the things folks came up with.
As with any event, it wasn’t without its hiccups, but the volunteers and participants took them in stride and are prepared to do better next year.
And I’ll see them then.
