Message from Executive Director - CARES Foundation, Inc.

Winter 2007	CARES Foundation, Inc.

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A Message from the
Executive Director

Dear Friends, Milestones As I reflect on this past year, I realize we have hit significant milestones. It is hard to believe a whole year has passed since the fire consumed our offices. At CARES, we tend to think in terms of “before the fire” and “after the fire.” It has become our milestone, our marker of time. With hard work, perseverance, grit and lots of support from you, we have made it to this one-year anniversary and are stronger than ever. We are so blessed. The other milestone we have passed is our fifth anniversary! CARES was launched in 2001. How quickly we have grown and how deep the roots of our community have spread. It is due to you—our members. You have joined CARES in our effort to create the wonderful resource for those affected by CAH and helped us to expand our impact. Visit to NIH In December, I had the opportunity to visit Dr. Deborah Merke and Carol Van Ryzin, CPNP at the National Institutes of Health, Institute of Child Health and Human Development. As you know, Dr. Merke is running the first and largest Natural History Study of CAH, which is also supported by a grant from CARES. To date, CARES has donated $125,000 to this program and we will donate another $65,000 this May to help run the study through 2008. So far, they have enrolled and studied over 150 individuals with CAH. The data and insights into CAH gained from studying such a large group of patients will be invaluable to our community and hopefully lead to better treatments or a cure. We owe special thanks to Bill Trzos, Quest Diagnostics and Peregrine Charities for their generous donations to support this research. The NIH program is impressive. The Children’s Clinical Research Center is bright, clean, has beautiful facilities, along with the Children’s Inn right across the street for lodging for study participants. Dr. Merke and her staff are focused on helping the patients receive the best care possible. In addition to a complete work-up, the staff does extensive training with the families/patients so that they understand CAH and the instructions for care. It is truly a patient-centered facility run by caring staff. New studies will be launched in the fall, and the data collected so far is being analyzed so that preliminary results may be published in the near future. Conference 2006 Our conference was outstanding! Our speakers were terrific and once again graciously donated their time and expertise to help our families. We owe our heartfelt gratitude to our generous sponsors: Centers for Disease Control; Pfizer, Inc.; PerkinElmer; Ethicon, Inc.;Eli Lilly; Merck; March of Dimes; Genentech; Organon; The Fairhurst Family; and Patty Genovay. We thank Saint Barnabas Medical Center and Dr. Henry Anhalt for co-hosting this conference, for providing guidance on the program and for providing the contact hours for nurses. We also thank the Newborn Screening Programs of New Jersey, New York, Pennsylvania, Connecticut and Delaware for helping us reach new families. I encourage you to visit our Conference Report page to read more about the conference. Thank You, PerkinElmer! This issue is sponsored by our friends at PerkinElmer, a dedicated supporter of CARES and the CAH community. New Year, New Beginnings As we embark on 2007, I look forward to a year of calm (no more disasters, please!) while we can get back to improving and increasing our services. Thanks for bearing with us and supporting us during a tumultuous 2006. Warmest Regards, Kelly



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