Executive Director:

Best Wishes for a Happy and HEALTHY New Year to all! As the New Year begins, we have lots of new initiatives and many exciting changes here at CARES Foundation.

On October 18, 2003, we held our third conference in Los Angeles at Childrens Hospital Los Angeles. It was a phenomenal day for me and hopefully for those who attended as well. We had over 165 people attend, some coming from as far away as the United Kingdom. This was the first time we offered continuing education credits for nurses, and were pleased to have a number of nurses in our audience in addition to some physicians and medical students. Our first speaker was Dr. Mitchell Geffner, our host from Childrens Hospital Los Angeles, who gave a thorough overview of CAH. Then Dr. Maria New, from Weill-Cornell New York Presbyterian Hospital in New York, spoke about her experience in treating CAH, discussing prenatal treatment, use of growth hormone and other new developments in CAH treatment. Dr. George Cunningham spoke about the newborn screening situation in California. Dr. Sheri Berenbaum, from Penn State University in University Park, PA, spoke about behavior in CAH. Dr. Ricardo Azziz from Cedars Sinai in Los Angeles explained how CAH/NCAH affects women of reproductive age. Dr. Dix Poppas from Weill-Cornell New York Presbyterian Hospital in New York gave a thoughtful explanation of surgical reconstruction for virilized girls with CAH. It was a long, but exciting day. I enjoyed meeting so many of our members and watching the camaraderie that we all felt, being in a group who knows what we all have been through and are dealing with on a daily basis in coping with CAH.

We thank Dr. Mitchell Geffner and Childrens Hospital Los Angeles for hosting the event and supporting us all through the planning process. They were just terrific and so helpful. I also want to thank all of our wonderful speakers for donating their time to come out to California and address our group. We are incredibly grateful to them all; and they were wonderful! I want to thank the California Department of Health for their assistance in helping us arrange for continuing education credits for the nurses who attended the conference and for issuing those credits.

I also want to thank all of the volunteers who showed up to help with the set-up and clean-up, signing everyone in and greeting the attendees. I truly could not have done it without you!!! Special thanks to Starbucks for donating the delicious coffee break goodies and to Jennifer Cribbs for arranging the donations!

Our next conference is coming to Summit, New Jersey on Sunday, October 24, 2004 at Overlook Hospital.

CARES is pleased to announce that it is collaborating with Cornell and Dr. Maria New on a clinical trial that will look at the natural history of genetic steroid disorders. We are honored to have been included in this important study and will be reaching out to the membership to help with this in the near future. You can read more about this study on Page 11.

We will be moving out of my basement soon! With our growing membership and the need for more and more services, we have out grown my basement and are moving into real offices in a nearby town in the next couple of months. This is a big step for us, but will allow us to add additional staff to better serve the needs of the CAH community. Come visit us!

Many thanks to all of you who have made donations to CARES in response to our holiday letter. Our year-end campaign has raised over $45,000 and donations are still trickling in. If you have not made a donation yet, but are able to do so, we would be most grateful. You can mail in a check or give online at our web site. Many thanks to the members who reached out to their friends and families on our behalf to contribute to CARES and to our Board Members, whose fundraising efforts have been quite successful. Special thanks to board members Adam Leight, Brad Smith and Dr. Diane Snyder, our top fundraisers this year.

Linda Mears has joined our staff as the Director of Development. Linda has 15 years experience in the field, having worked at such venerable institutions as the New York Philharmonic, Lincoln Center and the Pingry School. We are pleased and honored to have her join our staff. Linda can be reached via email at Linda@caresfoundation.org.

Our new Fundraising Guide is now available for those interested in helping with our fundraising efforts. Just email/call us and we will mail one out to you. As our organization has grown, the need for our services has grown too. So, in order meet the needs of the CAH community and truly represent its interests to the rest of the world, our need for funding has increased. Also, if we want to make difference in making substantial grants for research, we must raise large sums of money to do this. We need your help. Please consider arranging a charity event for CARES. Our fundraising staff are here to help you with ideas and planning. See the wonderful story about Brad and Tina Smith on Page 16.

One of our members, Sue Bianchi, has offered to help us redesign our web site. It will have more extensive materials and will have an archive of our newsletters. Many thanks to Sue for all of her hard work and to my brother-in-law, Bruce Estes, for designing the new front page for us. We will send out an email as soon as our new website is up and running.

We are moving forward with our long term plans—our international drug donation program, trying to persuade the US drug companies to add CAH medications to their patient assistance programs, translating our materials and web site into Spanish, expanding newborn screening, and a Jewish awareness program. We need volunteers to help us with these efforts, so if you can help, please let us know.

Warm Regards,