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Landmark Newborn Screening Legislation Introduced

(UNION, NJ, October 23, 2006) - When Zachary Holtzman was born on July 20, 2004, in Atlantic City, New Jersey, he could have easily suffered adrenal crisis and death. Thanks to New Jersey's universal newborn screening program, however, a drop of blood was taken from his heel, and within a week of birth, he was diagnosed as having Congenital Adrenal Hyperplasia (CAH). He immediately was placed on life-saving medications and today is a happy, healthy two-year old. On Monday, October 23, 2006, legislation will be introduced in New Jersey to further expand newborn screening and codify the process by which the lives of hundreds of children like Zachary are saved each year.

"The 2006 New Jersey Newborn Screening Act is one of the most important pieces of legislation ever to be introduced and will directly affect the health and well-being of every single family in the state," said Kelly Leight, executive director of the CARES Foundation and member of the state's newborn screening advisory panel. "Not only does it expand newborn screening by statute but also mandates appropriate follow-up, treatment, education, and an annual review of all aspects of the screening program by an advisory committee."

No one ever imagines their pregnancy or unborn child to be anything but normal and healthy, especially if there is no family history of illness. One in 800 babies, however, are affected by genetic diseases that, if not detected in the newborn period before signs of the disorder become apparent, can lead to infant death, disability or severe mental retardation. It can make the difference between a healthy life and one that requires long-term care.

Newborn screening programs like New Jersey's, however, permit the diagnosis of such disorders before damage is done and allows referral to appropriate medical care. Technological advances will continue to enable the state to screen for increasing numbers of conditions in the future. This legislation allows the state to keep pace with the ever-changing technological and medical advances that will allow for effective expansion of the screening panel. It further provides that appropriate follow-up occurs. Rapid, efficient, and effective follow-up is critical to ensure that newborns needing further testing are evaluated quickly. The quality of follow-up services directly impacts the lives of families with newborns.

Newborn screening saves lives and saves the state money. If children can be detected and treated, preventing or minimizing symptoms of their disorders, they may not require state services such as special education and early intervention.

"Universal, comprehensive, mandated newborn screening saves lives," concludes Leight.

Congenital Adrenal Hyperplasia (CAH) is an inherited disorder affecting the adrenal gland that can result in life-threatening imbalances in salt and hormone levels. 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. An autosomal recessive disease, both parents must be carriers to have an affected child; but the parents are completely unaffected by the condition, and there is rarely any family history to indicate potential for inheritance of CAH. If not detected at birth, infants with CAH will go into adrenal crisis and risk death within a couple of weeks of life. If they do manage to survive, the potential for severe physical, mental and financial consequences is very high.

CARES Foundation, Inc. is a Union, New Jersey-based, non-profit organization committed to improving the lives of families and individuals affected by Congenital Adrenal Hyperplasia (CAH) through proactively advancing research for a cure, educating the public and health care professionals, advocating for universal comprehensive newborn screening, and providing support services and resources vital to the CAH community worldwide.

For more information on this landmark legislation, the CARES Foundation or CAH, please 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

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