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LOUISIANA POISED TO SAVE HUNDREDS OF LIVES
Expanded Newborn Screening to Begin August 1, 2006

(UNION, NJ, July 25, 2006) -- Next week, the state of Louisiana will begin saving the lives of hundreds of infants every year. Effective August 1, 2006, no family in Louisiana will have to go through what Jules Landry and her family did as the state will begin testing all newborn infants for 27 different genetic conditions, including Congenital Adrenal Hyperplasia (CAH).

Born on January 31, 2003, Jules was an apparently perfectly healthy little girl and soon was sent home with her family to Morgan City, Louisiana. It was not until her four-month check-up that there was any external indication that anything was wrong, and even then, it was only her pediatrician's keen observation and insistence on further testing that brought about a diagnosis of CAH.

"The pediatrician told us that something did not look right," recalled Jessica Landry, Jules' mother, of when the doctor noticed some swelling her daughter's genital area. It was then that the trauma began.

"He told us he wanted to run some tests on her and rushed us off to see a specialist," Jessica continued. Over the next two weeks, little Jules endured a torrent of testing - at one point her veins being so difficult to access that they ended up drawing blood from her head - while her family tried to understand what might be wrong. Finally, it was determined that she was physically fine, but her hormone levels were completely out of whack and she was in need of immediate medical attention. She began hormone replacement therapy and today is a happy and healthy little three and a half year old though the effects of her delayed diagnosis linger.

To compensate for the fours months she did not receive proper treatment, she has had to take higher than usual amounts of the steroids, the effects of which include excessive hunger and therefore obesity while she remains at risk of developing osteoporosis, premature puberty and other psycho-social issues.

"The thing I can not believe," said Jessica of this experience and what she learned through research thereafter, "is that if Louisiana had tested her for CAH as part of its newborn screening panel, she could have been diagnosed and birth. Her hormone levels would never have gotten so far out of control, and we would not still be fighting the after affects today."

"This expansion is fantastic news for all families and children in Louisiana," said Kelly Leight, the Executive Director of the CARES Foundation, Inc., a non-profit organization committed to improving the lives of individuals and families affected by CAH.

According to statistics kept at the American College of Medical Genetics one in every 800 children born will be diagnosed through comprehensive newborn screening with a condition that leads to infant death, disability, or severe mental retardation and can be prevented or minimized with early intervention and treatment. Based on a birth rate of 65,000 annually in Louisiana, that is one baby every five days that will be saved by this expanded testing.

In its severest form CAH can result in life-threatening imbalances in salt and hormone levels leading to adrenal crisis and possibly death. Frequently, newborn CAH babies show no outward signs of the disorder and are sent home only to present a few weeks later for urgent medical attention at a time when they are beyond resuscitation or have suffered irreversible physical or mental damage.

"On the other hand," says Leight, "if children with CAH are detected in the immediate newborn period, they simply are placed on proper medications and can expect to live normal, full lives."

One of 29 conditions recommended for testing by the American College of Medical Genetics, the American Academy of Pediatrics and the March of Dimes, the first to screen for CAH in the United States was Washington in 1984. With Louisiana's expansion on August 1, 2006, there will remain only three states in the United States - Arkansas, Kansas and West Virginia - that do not screen for this life-threatening disorder affecting the adrenal gland. According to a March of Dimes report released earlier this month, only the District of Columbia, Iowa, Maryland, Mississippi, New Jersey and Virginia require all 29 screenings. Arkansas, Kansas, Oklahoma, Texas, New Mexico, West Virginia, Pennsylvania and Montana screen for fewer than 10 conditions.

CARES Foundation, Inc. is a 501(c)3 non-profit organization committed to improving the lives of families and patients affected by CAH through pro-actively advancing research for a cure, educating the public and healthcare providers about all forms of CAH, advocating for universal newborn screening, and providing support services and resources vital to the CAH community worldwide.

For more information on CARES and CAH, please visit our website at http://www.caresfoundation.org or call 866-277-3737.

CARES Foundation Contact:
Kelly Leight
Kelly@caresfoundation.org
2414 Morris Ave., Suite 110
Union, NJ 07083
Phone: (908) 364-0272
Toll-free: (866) 227-3737
Fax: (908) 686-2019
URL: www.caresfoundation.org

CAH Family Contact:
Jessica Landry
Mother of Jules Landry
Phone: 985-385-3531

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