Janelle,

The MAGIC foundation is a wonderful organization for people affected with various disorders and growth disorders.  Before CARES, this was THE organization for CAH.  They have their own division and Kathy Cush the director is awesome.  Every summer they have a convention in Chicago.  We have been there several times and thought it was great.  Their website is:  http://www.magicfoundation.org/cah.html

They are a great resource for info too.  I think if CARES and MAGIC pulled their resources it could make a huge impact.  Both organizations do an amazing job at furthering the research and education of CAH.

Blessings!

Tonia