Joubert conference '13: Advocacy, new friends, and good burgers

So, I'm finally doing it. After 2 months and 5 posts of hinting at it, I'm finally going to write about the Joubert conference in Minneapolis.

It was from July 10 to 13, 2013. We (my Dad and I) left from Ottawa the morning of the 9th. Just getting to Minneapolis was kind of an adventure. We had to stop in Toronto first, for a four-hour layover. That, coupled with technical glitches due to some flooding, made things pretty interesting. Then we arrived in Minneapolis. The airport was really cool. We had to board a monorail to get from the gait to Baggage.

We got to our hotel the evening of the 9th, and started to meet people almost immediately. I'll be honest, I was a little nervous for the first day and a bit. For a "kid", I was clearly the oldest. As a presenter, the youngest. Thankfully, my nervousness started to subside as the conference got going the next day.

The first thing we went to was a small break-out session where families of adults with Joubert syndrome had the opportunity to  meet with some of the doctors and specialists attending the conference. There were four other adults in the session, along with a woman attending on behalf of her two daughters. The very first thing I noticed was how different each of us was. When the doctors started asking us questions, I found I had nothing to say. Later though, I mentioned about transitioning, writing, and speaking, and everyone was very interested. In fact, one or two people suggested that I could make a career out of it. (This would continue throughout the week)

The next morning, my Dad and I went to breakfast. Halfway through, we were joined by a young woman and her mother, both of whom were at the adult session the previous day. We talked for the rest of the meal and walked back to the conference's main meeting area together. It was fun, and was my first time meeting someone else with the syndrome.

The day's next event was a youth social for the older kids and adults. Even though I was much older than everyone else, I wanted to attend even just for the sake of physically meeting other people with Joubert. The woman running the group started off by asking people about their favourite music, TV shows, etc. It was fun for a little while, but I found that I just couldn't relate to things like iPads, the Disney Channel, and Taylor Swift. I guess I started feeling old. I left about halfway through, and talked to some of the kids later at lunch.

That afternoon was when I was to give my presentation, which I called My Journey with Joubert, Among Other Things. I've posted the video below.

It went over very well, and I got asked tons of great questions. Some, like about walking, talking, etc., I was expecting. Others, about topics like driving, dating, and socialization, were unexpected, but I handled them okay. These questions came mostly from the parents of some of the older kids. Mostly, I found that people were more interested in my stories about going to an accessible summer camp, taking Taekwondo or cute little kid things, like standing on my head or how my first word was platypus (yes, it really was). Afterwards, I got called an inspiration more than I could count. Now, normally I've never really liked that (no idea why, really), but this time I actually did, especially when the compliment came from one of the younger adults.

For dinner that evening, my Dad and I went out. For several months prior to the conference, we had been doing research on things to do or where to go to eat in Minneapolis. While watching shows like Man vs. Food and Diners, Drive-ins, and Dives, we learned about Juicy Lucy's, giant burgers stuffed with cheese. We got excited and decided that we had to try them.

Great timing, Dad...

That night at the hotel, I got a lot more compliments about my presentation. I had one family tell me how much I reminded them of their son, and how their daughter goes to a camp like the one I described going to. A couple parents who had asked me questions, introduced me to their kids, who later wanted to hang out with me. Another family approached us because the father and my Dad were both wearing clothing for two teams with the same name. Their 13-year old daughter, who had Joubert, then started to just come up to me periodically for the rest of the conference.

The Friday had nothing of any particular interest to me or my Dad, so we spent the afternoon playing tourist in Minneapolis. We took a small train through the city and finished the day at the Mall of America.

Saturday the 12th was the last full day of the conference. Originally, I had been asked to moderate a small group about adults with Joubert but, unfortunately no one signed up for it. Instead, some of the parents of the older kids, who had been impressed by my presentation, asked me to take part in a group about teenagers.

I'm in there, but just barely off camera.

I was a little nervous at first, sitting with a group of parents, but it ended up being very interesting. People talked about things like schooling, socializing, and what sort of activities their kids were involved in. When coming up with ideas for future activities, the idea of a Facebook for kids/young adults with Joubert syndrome was brought up. Some of the parents even thought I might make a good moderator for it.

The conference ended that evening with a dinner and dance. I was hesitant to do anything other than eat and take some photos, but one of the mothers got me up, and after a while I was dancing.

Sort of.

The most fun, and the biggest shock, was when a couple of the older kids and their parents wanted me to dance with them. At first, I felt a little old and out of place. As time went on though, I eased up a bit and had some fun.

Caught on camera having fun, also embarrassed.
 

Really nice group photo that I was sort of pulled into.

We left the next morning after many hugs and handshakes, and planned to attend the next conference in the summer of 2015.

Overall, the conference was an amazing, and kind of life-changing, experience. I met so many great people and have done a lot of new things because of it, including writing this blog.

Cheers

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- Photos used with permission.
- If you're interested in learning more about Joubert syndrome, visit the Joubert Syndrome and Related Disorders Foundation website at http://www.jsrdf.org/