Over the past 12 years, watching the effects of sometimes either oversuppressing and at times undersupressing my daughter's CAH, I've likened this to a balancing act. Trying to walk that fine line and not getting too far out of wack. Either direction could in the long run spell trouble. Even realizing that the hormone levels vary thoughout the day, I still wish we had some quick way of reading blood levels like there is for diabetics testing blood sugar. I keep hoping there is a grad or med student out there who happens on this message board who would be willing to do research on this type of thing. If there was any one reason to create a "formalized" CAH organization, research and education might be something we could direct and support. Our actions could ultimately benefit our children. I know I know... that means time and money.... but hey what's life for anyway! (I think those from the UK are in the right direction having recently formed a CAH support organization)