Originally Released: May 1, 1997
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The University of Maryland Medical Center is using a novel approach to solicit funds for a nationwide study of Celiac disease. Instead of holding dinners or galas, fundraising staff are tapping on computer keyboards and "surfing the net" to reach potential donors.
"We believe this is the first time the Internet has been used to launch a comprehensive fundraising drive for medical research," says Kirk Gardner, director of major gifts at the University of Maryland Medical Center. "We will continue surfing the Internet to solicit an estimated $600,000 to fund a national study on Celiac disease."
To begin this process, the funding requests have been posted on Web sites and servers that focus on Celiac disease and those that support people who have it. "In the first 24 hours, we raised over $1,200," Gardner says. The first posting was on April 15.
"This will give people who truly care about the disease a significant opportunity to make a difference," Gardner says. "This method presents another way for the Medical Center to tailor funding requests to specific groups. We believe finding donors along the information super-highway could become a model for other organizations searching for support as well," Gardner says.
Getting support for Celiac disease has been more difficult in the United States than in Europe, where the disease is known to be more widespread. About one in 300 people in some countries carry a genetic defect, putting them at risk of the disease. Until recently, the disease was considered rare in the United States. A new University of Maryland Medical Center study has found, however, that one in 250 people in the Baltimore metropolitan area carries the genetic defect for Celiac disease. Preliminary data from the study was published in the American Journal of Gastroenteroloy, May 1996.
"This study, while preliminary, shows Celiac disease may be much more common in the United States than earlier thought," says Alessio Fasano, M.D., the principal investigator of the study. Dr. Fasano co-directs the Center for Celiac Research with Karoly Horvath, M.D., PhD, at the University of Maryland Medical Center. The Center has one of only five laboratories in the United States approved by the Food and Drug Administration (FDA) to screen for Celiac disease.
Celiac disease can be treated with a strict gluten-free diet, but its consequences can be devastating if undetected or untreated. It can lead to intestinal cancer and a host of other ailments including joint pain, unexplained anemia, skin lesions, short stature, irritability and seizures. Gluten is most commonly found in breads and other grain products. But people who suffer with celiac disease have to read food labels carefully, because gluten may be hidden in other products, such as in ketchup, beer, pasta, some medicines and even ice cream. Dr. Fasano says more research is needed to establish the prevalence of this disease. Plans are under-way for a national multi-center study in the U.S., if enough money can be raised to fund the study.
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