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CARES Foundation Receives $50,000 Grant from Peregrine Charities

(Union, NJ, July 27, 2006)  -- The CARES Foundation is pleased to announce its receipt of a $50,000 grant from Peregrine Charities to support critical research into Congenital Adrenal Hyperplasia (CAH), a rare and often undiagnosed disease affecting an estimated 1 in every 10,000 – 15,000 newborns.

“We are honored and grateful for Peregrine Charities’ significant contribution to this research vital to the future health and welfare of the CAH Community,” said Kelly Leight, executive director of the CARES Foundation. 

In any disease—rare or common—basic research is the key to understanding the underlying cause. Only with a complete characterization of a disorder can rational, effective treatments be designed, and true advances in quality of life and longevity be made. In an era of mounting deficit and budget cuts, it is research on the rare diseases that gets cut first.  Peregrine Charities was formed as a grant-making family foundation to help under-funded and underserved populations - families afflicted by rare or "orphan" diseases.  

“Peregrine Charities has clearly recognized the need in our orphan disease community, and made an impressive commitment to help fill the gap,” continued Leight.  

In 2005, CARES funded research at three sites , the National Institutes of Health Clinical Center, Penn State University, and the Children’s Hospital of Los Angeles, for a total of $78,500.  Moneys obtained through this Peregrine Charities grant will go to continue the funding of seminal new research, a Natural History protocol of CAH, as being conducted by Deborah Merke, MD, MS, Chief of Pediatric Services for the Clinical Center, which is NIH’s clinical research hospital in Bethesda, Maryland. 

This type of study is a classical one, of special utility when the disease in question (like CAH) derives from a genetic mutation that has ramifications on the development and function of a wide range of body systems. Such a study takes a comprehensive look at the patient, and chronicles many aspects of their development over several years. By broadening our basic understanding of the disease, the researcher reveals which physiologic processes are impacted, and why. With this knowledge, researchers are better able to design therapies that address the underlying errant biological processes, rather than just the symptoms.  The results of this research protocol will serve as a foundation for the study, treatment—and, hopefully in our lifetime, cure—of CAH patients.

As noted by Dr. Merke, “The CARES gift has allowed the addition of a nurse practitioner 32 hours per week dedicated solely to CAH clinical research.  This has been invaluable in allowing us to see more patients with CAH and start new clinical research studies that otherwise would not have been possible.”

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.  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.

Peregrine Charities is a 501(c)3 family foundation established by Russell R. Wasendorf, Sr. in 2004.   All of the foundation’s operating expenses are underwritten by Peregrine Financial Group, Inc., one of the many companies owned and operated by Mr. Wasendorf.  For more information, please visit www.peregrinecharities.org.

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 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

For More Information About Participating in Clinical Research at the NIH Clinical Center Contact:
Toll-free: 1-800-411-1222; TTY: 1-866-411-1010
E-mail: prpl@mail.cc.nih.gov 
URL: http://clinicalcenter.nih.gov/

Please direct media calls for the NIH Clinical Center to the Office of Clinical Center Communications: 301-496-2563

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