A good friend of mine called to tell me that her "Woman's Group" would like to do a fund raiser for my son. At first I didn't know what to say. We are not in need of financial assistance (at this point anyway) and for all intents and purposes Ryan looks like a pretty healthy, happy, young boy. We try to play down the fact that he has a life threatening disorder and live as "normal" a life as we can. It is a little tough to not think about CAH when he has to take painful shots every night! I told my friend that I wasn't sure that I wanted to have everyone in town knowing my son's private details and that there were other children out there that could benefit more from something like this. It also seems very wrong to me to profit from any illness. She impressed me when she told me that "according to her research CAH IS a life threatening disorder and could really profit from funding for research. It doesn't have to go to Ryan directly." I couldn't sleep all night. We could donate it to a research fund for CAH!!!! I have always said that there needs to be more research into this disorder and I have never heard any mention of ANYONE looking for a CURE. Then, while sleepless, I watched one of those entertainment shows, on which Michael J. Fox spoke about the fact that due to an increase in funding he believes there may be a cure for Parkinson's disease within the next 10 - 20 years!!!! I'm not saying that we could have the same results, but we can sure try. To the best of my knowledge there are no famous or extremely wealthy people effected by CAH or if there is they are not willing or able to come forward and do something like this. Therefore, there is no one to focus on or to bring attention to the needs of people who are inflicted with CAH. She also told me that a town that has a much lower income average raised $30,000 from one fund raiser and they intend to do it again next year. Granted that fund raiser was for the children who recently lost their father to cancer. A trust fund for college is being set up for them. I need more facts and information before I make my final decision. Does anyone know of any institution that is working toward a cure for CAH? I know that Dr. New is a scientist but I believe her focus is in the growth aspect of the disorder and has quite a full schedule. I also know of other hospitals that are doing research/trials on different meds to better treat CAH but I have NEVER heard of anyone working toward a CURE! If this is the case, how would I go about establishing a research team for CAH? Any ideas? I figured that I would come to the parents on this board because, in my opinion, collectively we have more information and experience on this subject than the medical field itself. I look forward to your responses via post OR EMAIL. Thanks in advance, Lynn