Spring 2005 CARES Foundation, Inc.

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Many families affected by CAH first learn about CARES by finding our site on the internet. Our website hosts numerous useful articles, archived newsletters, parent tips and resources. Sue Bianchi, our volunteer webmaster enthusiastically strives to update the site, while maintaining its artistic design. The CARES Foundation is extremely grateful for all of her work, her willingness to respond to our requests, and her patience. Sue lives in Northern California. She has three children and two grandchildren. Ashlee, her oldest grandchild, has salt-wasting CAH. “Being a small part of an organization that is involved in saving babies lives through newborn screening, supporting appropriate research projects for CAH, providing CAH education, and supporting families is very fulfilling,” says Sue. “I really enjoy working with the people at CARES Foundation and believe they are making a difference in the lives of our families.”

BRACELET SALE RAISES MONEY, AWARENESS

EVERY1CARES bracelets are still selling thanks to the energy and dedication of CARES Foundation members! So far, we have distributed a total of 5,604 EVERY1CARES bracelets, resulting in $17,106 in sales. Bracelets are available at a cost of $3 each (minimum order of 5, plus shipping and handling.) To order, call (866) 227-3737 or order online at www.caresfoundation.org

News from the CARES Foundation Office

Winter 2004-05 Newsletter Correction In the CARES Foundation Newletter V4:1, Winter 2004-05, page 13, there is an error in the listing for Esoterix, on the chart entitled “U.S. Laboratories Offering DNA Testing for CAH.” Esoterix does not perform Southern Blotting, nor do they perform complete sequencing of the 21-hydroxylase gene. The mutation detection rate should be 90-95%. CARES Foundation apologizes for this error and any inconveniences it has caused. Updated copies of the chart can be printed from the website: http://www.caresfoundation.org/news_letter/winter04-05_page_8.htm or requested from our office. * * * * * Feedback Needed! CARES Foundation needs your feedback! What would you like to know more about? What topics are most interesting or important to you? Contact us! We would appreciate it! * * * * * Updated Physician Listings Available CARES Foundation has compiled a large list of pediatric endocrinologists, some adult endocrinologists, urologists and psychologists with experience in treating CAH/NCAH patients. Recently, we updated the listing to ensure that we distribute the most accurate and detailed contact information available. We sincerely thank all the healthcare professionals who responded to our letter, and promptly returned our questionnaire. * * * * * Extra Paper Newsletter Copies Are Now Available A limited number of our archived newsletters are available for our members. If you would like to request extra copies for distribution to your doctors, nurses, family members, teachers, etc., please let us know by contacting Renata (renata@caresfoundation.org or (866) 227-3737). Remember to include the exact number of newsletters, the edition you would like, and where the newsletter should be sent. The following issues are available: Winter 2004, Spring/Summer 2004, Fall 2004, Winter 2004-05. As always, you can find the contents of these newsletters online: www.caresfoundation.org/news_letter/ or click on Newsletter… Archives on the home page * * * * *

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