we thought about taking the same avenue you are to research our families to see, if by some remote chance, other members of either my daughter's or her husband's family had/has CAH since our grandson was born with cah 7 years ago. None of us had ever heard of it prior to 1993, but our endo said that years ago children were dying of unknown causes, which by the way, could have very likely been cah related, but no one knew about it during the days of our ancestors, therefore, it would be had to trace generations back. i'd still love to research this. the recessive genes stated somewhere with someone, but to our knowledge our grandson is the only child to be alive with the diagnosis of cah.