My Why

Why am I involved with all this Joubert syndrome stuff (conferences, the board, writing/speaking, etc.)? That was one of the questions posted during the countdown to JS Awareness Month.

When I was diagnosed eight years ago, I really didn't care for Joubert syndrome all that much. In fact, after doing some research, I was kind of scared off by the fact that there were so many kids who were so different and so much younger than me.

Over the next two years, I linked in with the JS Foundation and joined the online community, but I still did my best to avoid things related to the syndrome.

It wasn't until the summer of 2013, when I was asked to attend and speak at the Joubert conference in Minneapolis, Minnesota, that my opinions about JS started to improve. A huge part of that was actually physically meeting families and individuals with Joubert syndrome. I heard their stories, and shared mine, and suddenly I was noticing similarities and things became more personal. Then that led to social interactions, which led to people asking me to become more involved in the community, which led to me wanting to be involved!

This brings me back to "Why?" I'm involved with the JS community for the social interaction, experiences, and the opportunities to give back to people like me.

Since the Minneapolis conference, I've met loads of other adults with Joubert syndrome, some of whom have become good friends, and a couple I've had the pleasure of meeting in person thanks to other conferences, which is a big deal when you're in Ottawa, Canada, and they're around places like Phoenix, Denver, and Cleveland.

Though it doesn't necessarily have to do with the syndrome itself, the conferences and my position on the Board have allowed me to travel to many great places I never would have ever thought of going to otherwise, like Dallas, Phoenix, and Chicago.

With travel, good food comes too.

I want to go back!

And maybe most importantly, being involved in the Joubert community has given me the chance to advocate for people like myself. I've spoken at other conferences, attended events here at home, led discussion groups for youth and other adults with JS, started this blog, and I'm now a member of the Joubert Foundation's Board of Directors.

So that's my Why, and also Blogtober 2019's first official post.

* If you'd like to learn more about Joubert syndrome, visit the Foundation's website at jsrdf.org

Cheers!