Executive Director:

I hope that everyone had a peaceful holiday. I send wishes to all for a happy and HEALTHY 2003! This past few months has been very exciting here at CARES Foundation, Inc. We have started in earnest our fundraising campaigns and are having some success. I deeply thank those of you who were able to support us with a tax-deductible contribution and hope that others can help in this effort as well. We need your financial help to continue and expand our service to the CAH community.

We have had some terrific victories in the newborn screening arena, with Ohio mandating the addition of CAH newborn screening and New York (finally) beginning CAH screening in October. Many CARES families wrote letters and made phone calls, and your actions made the difference. Our voices are being heard! This winter, we need to turn our energies to other states that are looking at expansion, to make sure that these states implement comprehensive newborn screening that includes CAH! Please read the Newborn Screening Update article on page 11 for full details.

Since our last newsletter, I have had the opportunity to represent the CAH community in a couple of capacities. I am now a member of the Newborn Screening Diagnosis and Follow-up Workgroup, Maternal and Child Health Bureau of The Health Resources and Services Administration, United States Department of Health and Human Services. The purpose of this Workgroup is to develop uniform guidelines for all the states in the US for follow-up and diagnosis. In this capacity, I can ensure that the needs of CAH babies and parents are well considered in the national guidelines.

In November, I met with the intramural research staff and extramural research officer at the National Institute of Child Health and Human Development at NIH to discuss ways to increase research related to CAH/NCCAH. I found them all so encouraging and supportive of our efforts. We are quite fortunate to have intramural researcher, Dr. Deborah Merke at NICHD because she has chosen to focus much of her research on CAH. I am quite optimistic that this was the beginning of a nice relationship between the CAH community and NIH. I expect to go down to NIH in Bethesda, MD again this winter to discuss research to benefit women of reproductive age with CAH/NCCAH. I will keep you posted on the results of that meeting as well.

I also attended a meeting hosted by NORD (National Organization of Rare Diseases) in New York City. The purpose of the 2-day meeting was to bring the leaders of rare diseases support groups together with the personnel from the Office Of Rare Diseases and other Institutes at The National Institutes of Health. I learned so much about the "System" and what we need to do as a rare disease community to increase research focused on CAH. I also had the opportunity to meet the leaders of many other rare disease organizations. It was terrific meeting so many dedicated people working to help those affected by rare diseases. We had so much in common.

Be Well all and again, Happy New Year!