Press Room>Archive>Research

CARES Foundation Takes on Funding Research for a Cure for Congenital Adrenal Hyperplasia

(UNION, NJ, January 3, 2006) -- Nearly every day you read in the newspaper, listen to a story on the radio or see something on television about research for a cure for cancer, diabetes, Alzheimer's or Parkinson's. These are fairly common diseases and therefore attract a great deal of attention and money for research. The drive to fund research for a cure for a relatively rare life-threatening disorder, Congenital Adrenal Hyperplasia (CAH), however, has begun through the efforts of the Congenital Adrenal Hyperplasia Research, Education and Support (CARES) Foundation.

"CAH has no cure and without research there never will be one," states Kelly Leight, executive director of CARES. "And reality is that without funding there will be no research."

The CARES Foundation represents over 2,000 individuals and families affected by CAH and 500 healthcare and public health professionals. In four short years it has become an international organization dedicated to providing support to parents and patients affected by all forms of CAH as well as advancing education, newborn screening and most importantly research for a cure for CAH.

"When CARES was established in 2000, our initial mission was to develop an information pipeline for people and families with CAH. Over the next several years, we expanded our activities to include public awareness and education campaigns," explains Kelly Leight, executive director of CARES. "While Support and Education will always be at the core of our activities, it is the "R" in CARES that holds the greatest hope for our children's futures."

CAH is a family of inherited disorders affecting the adrenal gland. The most common form is 21-hydroxylase deficiency, which is inherited in severe or mild forms. The severe form, called Classical CAH (CAH), is a life-threatening disorder. If undetected at birth, CAH can lead to adrenal crisis and 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. The genetic frequency of Classical CAH is approximately 1 in 15,000 births.

The milder form, called Nonclassical CAH (NCAH), may cause symptoms at anytime from infancy through adulthood. While each individual presents differently, common symptoms include premature development of body hair; body odor; early, rapid growth spurt, but ultimately short stature as adult; oily hair and skin; severe acne; anxiety, depression, mood swings, migraines; and infertility. NCAH is a much more common disorder than Classical CAH. It affects 1 in 100 to 1 in 1000 in the general population, depending upon the ethnic composition of a given community, since its frequency varies in different ethnic groups. For example, it affects 1 in 27 Ashkenazi Jews, 1 in 40 Hispanics, 1 in 53 Croatians, and 1 in 300 Italians. This frequency makes NCAH the most frequent genetic disorder identified to date.

At present CARES is collaborating on a $6 million research grant from the National Institutes of Health (NIH) Office of Rare Diseases and is involved in NIH's Rare Disease Consortium. Additionally, CARES is working with researchers to identify those in the CAH-affected community interested in participating in clinical trials. Finally, CARES has made awards in excess of $100,000 for research.

"Without further funding, however, all this will come to a halt and the dream of a cure will vanish," states Leight. "Every donation is needed and appreciated and bringing us closer to finding a cure for CAH."

CARES Foundation, Inc. is a tax exempt, non-profit, educational 501c(3) organization. Its purpose is to educate the public and physicians about all forms of Congenital Adrenal Hyperplasia, its symptoms, diagnostic protocols, treatment, genetic frequency, the necessity for early intervention and benefits of newborn screening. It is also dedicated to providing support and information to affected individuals and their families. To learn more about CAH or to make a donation to the CARES Foundation, please call 973-912-3895 (in New Jersey); 866-227-3737 (toll-free); or logon to http://www.caresfoundation.org.

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

###