<<Disclaimer: Verify this information before applying it to your situation.>> UNIVERSITY OF MARYLAND CENTER FOR CELIAC RESEARCH MULTICENTER SEROLOGICAL STUDY UPDATE AS OF January 31, 1999 ____________________________________________________ PROGRESS OF STUDY We have tested 1,579 samples as part of the Multicenter Serological Study for the prevalence of celiac disease in the United States. Our preliminary findings indicate a 5.8% positive finding of first degree relatives and a 3.2% positive finding of second degree relatives of celiacs. These findings are in the same range as were found in most of the European studies done in previous years. As we initially stated in our protocol, we will need to test a total of 45,000 blood samples. The six (6) regional centers have begun minimal screening of study participants. Now we need the necessary dollars to put the study into full operation. Blood testing, supplies, and shipping charges will increase significantly in direct proportion to the samples processed. PROGRESS OF FUND RAISING As of January 31, 1999, the University of Maryland's Center for Celiac Research has received approximately $231,000 in contributions and pledges. We thank all of you who have made a contribution or pledge. As we reported in the September update, when we began this effort back in May of 1977, we suggested that if 1000 Celiacs, relatives or friends would make a commitment to pledge $200 per year for three (3) years, we would be on our way to funding this extremely important study. As of September 1st, we had received only 122 pledges in the amount of $70,335. To date, we have received only 8 additional pledges; however, we did receive a significant number of cash contributions for which we are very grateful. For now, we cannot rely on any outside financial assistance. So please, help us to help you. Remember we are not asking you to make a contribution, but to make an investment in the well being of every celiac - now and in the future. We wanted to advise everyone that due to circumstances beyond our control our voice mail line 410 706-2715 crashed on December 20th. The problem was corrected on January 11th; however, all messages that were left during that time were lost. We apologize for any inconvenience this may have caused. WHAT CAN YOU DO? 1) If you have not made a pledge or contribution, please consider making one at this time. Please make checks payable to the UM Foundation, Inc. Center for Celiac Research, Attn: Pam King, 700 W. Lombard St. Room 206, Baltimore, MD 21201. These funds are administered by the University of Maryland Foundation, Inc. 2) If possible, increase your current pledge or make another gift at this time. 3) Discuss the importance of this study with fellow celiacs, relatives, friends or whoever might be in a position to help. Ask them to contribute. 4) Organize discussions and/or fund-raising efforts with your local support group. For example, Tri-County Celiac Sprue from Walled Lake, MI organized a bake sale and the Greater Louisville Celiac Sprue Support Group organized a walk/run event. Both donated the proceeds to the Center. 5) Help us to identify possible organization, companies, trusts or foundations that might be in a position to help. Please contact Pam King at 410-706-8021 if you have any questions or need any assistance. 6) Send contributions to the Center for Celiac Research in honor or in memory of a friend or loved one. Make a gift to the Center in honor of the new year. IMPORTANT ANNOUNCEMENT The University of Maryland's Center for Celiac Research, the University of Chicago's Medical Center, and the University of California, San Diego are pleased to announce joint sponsorship of the 9th International Symposium on Celiac Disease to be held August 10-13, 2000 in Baltimore, Maryland. For the first time this prestigious meeting that attracts the world's most renowned and respected experts on celiac disease will convene in the United States. Leaders and members of celiac communities from around the world will also be in attendance. We anticipate a very large attendance and will release additional information as it becomes available. Our purpose in releasing this information to you at this time is to give you enough time to plan on attending and participating in what will be another unprecedented milestone in the history of celiac disease the United States. Thank you for your commitment to the celiac community. Pam King Director of External Affairs