I think you should contact Kelly Leight with the CARES FOUNDATION ... she has a wonderful web site about CAH and is trying (single handed) to increase awareness of CAH.  If doctors were more aware about how to treat (and hopefully some day cure) CAH then you son would not have been so mismanaged and had growth issues. Yes...CAH is life threating if not managed right... (I KNOW and so do others that have children dead from CAH). So please (PLEASE) have the woman's group give their money to CARES (Dr. Maria New is the sponsor - I agree that it will be a genetic cure and she is an expert in this area).