Joubert Syndrome Conference

If you're reading this, you probably know that we just returned from the 2011 JS Conference in Orlando, FL.  I know, who picked Orlando in July, right?!  It was HOT! 

We left the conference with a lot of mixed feelings.  The entire week brought a lot of ups and downs, things that were really exciting and things that were really disappointing.  The best part of the entire trip was hands down, meeting the other families that I've been able to connect with through the JS Parents page on Facebook!  These families are awesome!  Kimberly Stapleton and her girls Tilly and Fiona, Amanda & Casey St. Clarie-Rumore and their girls Ellah and Leyla, The Mack Family, Laura Buchannan and her brother Matt Smith, Brett & Angelina Elliott, The Weimer Family, the families that we met from here in Minnesota, I could go on and on...all of these people were so caring, so welcoming, and SO fun!  Thank you to all that we were able to connect with and spend time with!  It truly was an honor!  And I can't wait for Minneapolis 2013!

The conference started off with the "Medical Symposium", there were several doctors that attended and presented information regarding their specialty and the advancements and research that has been done in that particular area.  This portion of the conference was quite disappointing to me; it was very technical and hard to follow.  I guess I went in with the expectation that these doctors would present with the families as their audience and that they would want to get their hands on Leyla and talk to us about her, etc.  That wasn't the case at all.  There was no interest in seeing her MRI or ultrasound images, no intrest in even getting their hands on her.  So, that was a little frustrating to me.  On the second day, we were able to meet with the panel of doctors in a small group which would have been great had it been more than an hour long.  We were in the room with about 5 other families and each of us essentially got to ask one question, got a half an answer and an email address to follow up...so, again, that was disappointing.

As a whole, I would say that the conference was a good experience but, again the thing that made the trip worth it was the people!