Wednesday 29 July 2015

Back from Chicago

Well, I'm back from Chicago.

It's hotter than Hell here, so I won't be writing much just yet. Expect a huge, awesome post about the Joubert conference and last week's events soon, though!

I will say for now that it was a fun, informative week of meeting friends new and old, touring a really beautiful city, and consuming, in hindsight, too much junk food.

So, cheers until this heat dies down!

Monday 20 July 2015

Chicago Bound!

This Wednesday, the 22nd, is the start of the 2015 Joubert syndrome conference in Chicago, Illinois. It runs until Saturday the 25th, and I can't wait to go! I went with my father to the last conference in Minneapolis in 2013, and this time the whole family is going.

We're leaving on Tuesday and arriving at the hotel in Chicago Wednesday afternoon.


There are so many people I can not wait to see! People I met in Minneapolis and get to see again, online friends I've known for the last year or two and get to meet in person and, of course, completely new people. A lot of people apparently can't wait to see me either. One of the mothers I met in 2013 has told her son (13 with JS) about me and is excited to meet, and one of the fathers says he's bringing me comic book-type gifts!

Like Minneapolis, I've been asked to speak about my life and being diagnosed. This time though, my parents have been asked to answer questions with me afterwards. I'll also be speaking at the same time as another older guy with JS. I haven't physically met too many other adults with Joubert syndrome, so that should be exciting!

I will also be leading a group session for teenagers and other adults with JS to talk about our various challenges and successes. I got the idea in Minneapolis after several teenagers started to interact with me on there own. Parents liked the idea, and even some of the teens/adults seem excited. Should be fun and interesting.

Then there's Chicago itself. I've never been, so it's yet another new place to cross off the list. It sounds like there's a lot to do, and I'm very eager to try some deep-dish pizza!

So, very excited, almost packed, will post about the conference's events when I return.

Until then, I'm Chicago bound.

Cheers!