Official Re-Naming

After reading many different comments through facebook, I have found out from differnet families that Eva is now diagnosed with Koolen Syndrome.  Thats right, no more C17q21.31 Microdeletion Syndrome.  I was getting used to telling others and them saying "huh?".  Now  I am sure that the comment will be more like, "I have never heard of that." 

Koolen Sydrome was named after Dr. DA Koolen, Genetic doctor that has his research laboratory at the Radboud University Nijmegen, Netherlands.  It is the exact same diagnosis just an easier name.

This  link is not very reader friendly unless you are a scientist and understand the lingo:

http://www.omim.org/entry/610443?search=17q21&highlight=17q21