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Victory in DC for Families
Expanded Newborn Screening Program Saving Lives

(WASHINGTON, D.C., February 16, 2006) -- On February 1, 2006, the District of Columbia began testing all newborn infants for 40 disorders under an expanded newborn screening program that is among the most comprehensive in the nation. Until this month, the District tested for only seven disorders.

"This expansion is a great victory for the District and for its children," exclaimed District resident Mark Engman when he received the news. Eight years ago his son, Jackson, was born with the genetic condition, Congenital Adrenal Hyperplasia (CAH) - one of the disorders now being tested for under the expanded program. - Jackson nearly died before doctors correctly diagnosed his condition. As the father of a CAH-affected child and member of the Mayor's Advisory Committee on Metabolic Disorders, Engman and other committee members have been urging the District to dramatically expand its newborn screening program.

Now all it takes in Washington, D.C. to diagnose a child with CAH is a drop of blood.

The first to screen for CAH in the United States was Illinois in 1986. Of the 50 states, today only four - Arkansas, Kansas, Louisiana and West Virginia - remain that do not screen for this life-threatening disorder affecting the adrenal gland.

In its severest form CAH can result in life-threatening imbalances in salt and hormone levels leading to adrenal crisis and possibly death. The effects of milder forms of CAH include impaired growth, infertility, and significant quality-of-life issues. An autosomal recessive genetic disorder, CAH affects males and females in equal numbers; however, its frequency varies by ethnicity. For example, the milder form affects one in 27 Ashkenazi Jews, one in 40 Hispanics, one in 53 Croatians, and one in 300 Italians.

"The newborn screen for CAH is sensitive, simple, and saves lives," explains Kelly Leight, the Executive Director of the CARES Foundation, Inc., a non-profit membership and advocacy organization of which Engman is also a board member.

Testing for CAH involves collecting a drop of blood from the heel of a newborn at birth on filter paper, allowing it to dry, and then sending it to a laboratory for testing via an immunoassay (radio, florescent or enzyme) procedure.

"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," says Leight. "On the other hand, if CAH children are detected before adrenal crisis, they simply are placed on proper medications and can expect to live completely normal, full lives."

Something that now is possible in Washington, D.C.

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 world-wide.

For more information on CARES and 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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