JS Conferences for Beginners

 

For various reasons, I won't be able to attend next week's Joubert Syndrome conference in Seattle, Washington.

Because of that, and also since this Summer marks a solid decade since my first conference in Minneapolis, I had an idea for a primer of sorts, a few things I've learnt from ten years of conferences that might help any first-time attendees.

1. It'll be intimidating

I've written before about how seeing so few adults and so many differences when I was first diagnosed with Joubert syndrome scared me a little, so it'd be an understatement to say that I was nervous in the time leading up to the JS conference in Minneapolis. This was also my first exposure to the community, so just the sheer amount of people was quite a shock. I was also asked to speak to said group, which probably didn't help things at the time either.

2. People don't bite

As a counter to the first point, within that large, new group were genuinely friendly, and all-around great people who made me feel welcome, made me see just how similar we all really are, and without knowing it, basically walked me back from a cliff of nervous terror. 

Since then, many of those awesome humans and more have become very good friends who I've kept in touch with and have looked forward to seeing every couple of years.

3. Experience as much as you can

I went into the Minneapolis conference with a lot of questions and very little knowledge of Joubert syndrome. There was also a lot to do. Luckily, I had a geneticist who pointed out what medical sessions to attend and which specialists to meet. When I was registering, the Foundation's president, a fellow Canadian who I had met the previous Summer, did the same for my father and I with the conference's social events. Over the course of the week, we each went to as many things as we could to get the right amount of info and get the full experience.

4. Enjoy yourself and have some fun

Yes, it's primarily a medical conference with a lot of information to share and absorb, but there's also a lot of fun stuff as well. There's usually something for every demographic, from little kids and siblings to grandparents, to provide opportunities for socializing, whether it's a Teen Room, Adult Meet-up, Mom's Night, or Dad's Night. And of course, there's the dinner and dance to cap off the conference. Very, very fun! 

If you're on vacation, the conferences also do a good job at making time for tourist opportunities. I've been to the Mall of America and eaten a Juicy Lucy in Minneapolis, taken a fun boat ride/architecture tour through Chicago, been blown away by desert scenery in Scottsdale, Arizona, and went to Hershey's while driving home from the conference in Baltimore. 

I'm sure I could go on for another couple posts, but this is the gist of what I may have benefitted from going into everything back when.

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I'll be missing folks next week, but I know it's been a long time coming (shout-out, Conference committee!) and should be loads of fun for people. 

Cheers