Noonan Syndrome Conference - Part 1: The Resort

Ok - we have a lot of ground to cover here.  We went to the Noonan Syndrome Conference in Orlando, Florida.  WHAT is Noonan Syndrome you may ask (NS)?  It is "The most common genetic disorder you have never heard of".  We learned so much about the disorder, and met so many families with NS.  It was an amazing experience.  The Foundation did a great job of putting together the Dr.s with our families and tons of information.  The Lionheart medical company provided all the members with medical notebooks. They are a non-profit organization that helps parents manage their kids' medical information into an easy to transport notebook - BRILLIANT!  Oh and the founder happens to be a parent of a special needs child so she knows what it takes to get organized!

More info here

We stayed at the LOVELY Renaissance at Seaworld Resort.  This place was beautiful and I found the staff to be so very friendly.  They really seemed to understand that they were catering to a group of Special Needs and Disabled people.

This the view from our 10th story balcony.  Glass elevators take us way up to the top floor.  What a sight!

Check out the gorgeous fountain to the left, next to their friendly bar.  The front desk staff was so helpful and answered all the crazy questions I had to ask.  They have a Navigator desk, who helped us get tickets to Universal Studios and helped helped us schedule transportation.

....And look at this super cute Shamu waiting for us in our bathtub!

Did I mention that the resort is across the street from Seaworld?  We walked right over (even though they do offer a shuttle).  It's so convenient to just go home in the afternoon and take a little break from the Orlando heat.  I will share about Seaworld in my next Blog.....

In case you are wondering... my daughter Jackie has Noonan Syndrome.  She worked very hard running Lemonade stands and garage sales to help pay for her trip to the parks while in Orlando.