Looking back on the 2017 JSRDF Family & Scientific Conference - Joubert Syndrome & Related Disorders Foundation
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It’s been more than a month since the end of the conference, so we figured it was high time (way past high time, actually!) to say farewell to Phoenix – and point out just a few of the things that made this year’s conference so special.

1. It was huge. More than 500 people from 10 countries attended the conference, which took place from July 19-22 at The Scottsdale Resort at McCormick Ranch. By far, it was the largest conference ever organized by the Joubert Syndrome and Related Disorders Foundation. By comparison, there were about 320 people at the 2015 conference in Chicago and 180 at the 2013 conference in Minneapolis. This year, the foundation roughly doubled the amount of scholarship money it awarded to families needing help covering the cost of attendance.

2. The secret video. Those sneaky conference organizers gave us a pleasant surprise on the last night of the event: Just before the big Saturday night dance, attendees were treated to a beautiful video montage featuring many of the JS kids and adults at the conference. The video, which was filmed and edited in secret in just a few days, generated a large amount of applause, a few tears and a ton of likes and shares on Facebook. If you want to watch it (for the 1st, 2nd or 28th time), we’ve included below.

3. The Treehouse. This year, for the first time, parents attending the conference were able to drop off their children with a professional child care company. So parents were free to attend sessions and otherwise enjoy the conference while the kids made new friends.

4. But we adults made a lot of friends, too. Yes, we always get a lot of good information from the speakers and other families at the conference, but sometimes what we really need is to meet a few other people who understand the challenges we face.

5. And finally … the pool. Phoenix gets hot. Really hot (just a few weeks before the conference, temperatures hit 118 degrees). So it made sense that the pool was often hopping with adults and kids alike – especially during the Wednesday night pool party.

The 2019 conference will be held somewhere in the Washington, D.C., area. The theme: Better Together. And this time around, those blessed individuals who raise a significant amount of money for the foundation can earn themselves free 2019 conference registration and hotel fees (to learn more about that, click here).

So get out there are raise money for the JSRDF. After all, next year’s conference could be even bigger.









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