Stevens Johnson Syndrome Foundation
Encourages Participation in Research Study by First Genetic Trust
- Study seeks to identify genetic markers for adverse drug reactions -

Denver, COLO. – May 12, 2003 – The Stevens Johnson Syndrome Foundation today announced that First Genetic Trust is currently conducting a research study of the genetics of drug-induced Stevens-Johnson syndrome (SJS) and Toxic Epidermal Necrolysis (TEN).

SJS is a serious allergic reaction to commonly prescribed drugs, including antibiotics, anti-convulsants and painkillers, that leads to severe blistering of the skin and the moist surfaces of the body (e.g. lips, mouth, eyes, esophagus, stomach, genitals). SJS is rare, affecting around seven people per million each year. TEN is a more serious form of SJS leading to severe blistering of the skin and mucous membranes, similar to SJS, but can be distinguished by the involvement of larger areas of the skin and mucous membranes and the severity of the condition. TEN affects approximately two people per million each year.

With more Americans taking antibiotics and other prescription drugs, the potential for deadly adverse drug reactions such as SJS is increasing. Because many physicians and emergency facilities are not familiar with the symptoms, treatment is frequently delayed, further exacerbating the condition.

"My daughter was only 11 months old when she suffered the nightmare of SJS. This research is vital to preventing others from having to suffer as she did," said Jean McCawley, president of the SJS Foundation. "We encourage participation in this study to find answers that could spare others from devastating illness."

People who have been hospitalized at any age with SJS or TEN within the past ten years may be eligible for the study. Study participants must be at least six years of age (in US) and 18 years of age (in UK) and be willing to have a medical history and a blood sample collected. There will be no study drug given. The study is being conducted in 12 centers in the United States and 2 centers in the United Kingdom.

For more information, please contact FGT: info@firstgenetic.net. For US residents, contact information will be forwarded to the closest research site. For UK residents, FGT will forward contact information to recruiting sites in Manchester or Liverpool.

About SJS Foundation

Founded in 1995, the Stevens Johnson Syndrome Foundation (Julie Foundation for allergic drug reactions) is a non-profit organization that provides information and support for victims, educates the medical community and encourages research in preventing adverse drug reactions. More information is available at www.sjsupport.org.

About First Genetic Trust

Founded by leaders in the fields of pharmacogenetics, bioinformatics, and information systems technology, First Genetic Trust provides genetic data handling and bioinformatics services to pharmaceutical companies, medical researchers, and health care providers engaged in genetic research. First Genetic Trust (www.firstgenetic.net) is headquartered in Chicago and has its research and development facilities in Rutherford, New Jersey.

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Note to Media: Personal stories, photos and videotape are available upon request.

Media Contacts:
Jean McCawley
SJS Foundation
303-635-1241
sjsupport@sjsupport.org

Valerie Chereskin
Chereskin Communications
760-942-3116
valerie@chereskincomm.com