ACCOI has funded and continues to fund ACC research through the National Organization for Rare Disorders, the University of Virginia and M.D. Anderson Cancer center.

National Organization For Rare Disorders ("NORD") is a non-profit organization in New Fairfield, Connecticut, which sponsors research projects for "orphan" diseases - those diseases which, because they are so rare, don't benefit from publicly-funded medical research or private research money. Adenoid Cystic Carcinoma (ACC) is in this category. Once NORD receives $35,000 in donations for a designated disease, it will initiate a search for a deserving research project and award a grant of $30,000 to that project. $5,000 of the $35,000 goes to NORD's expenses. YOU CAN VISIT NORD'S WEBSITE BY CLICKING HERE

YOU CAN READ ABOUT THE LATEST ACC RESEARCH GRANT, AND OTHER GRANTS FOR ORPHAN DISEASES, BY CLICKING HERE

UNIVERSITY OF VIRGINIA

Even though ACC is considered a "rare" disease, there is research being done, although not as much as for more common forms of cancer. The University of Virginia is researching ACC. Following is a statement from Christopher Moskaluk M.D., Ph.D. and Henry Frierson, M.D. of the University of Virginia:

Work is ongoing in our laboratory on the molecular analysis of adenoid cystic carcinoma (ACC). A post-doctoral fellow will work on this project for at least a two year period, for which we will try to get additional funds.

Although we have been working on ACC using tumor samples in our own collection, we think that obtaining additional tumor samples and setting up a central tumor registry will be very useful in analyzing the genetic abnormalities in these cancers.

In general, our work is at a basic level in that we are trying to understand what makes ACC cells different from normal cells. This requires trying to take apart one of the most complex pieces of machinery (the human cell) and see what is broken. We are using the same state of the art methodology that is employed in the study of much better funded cancers (breast cancer, prostate cancer, etc).We are very appreciative of your members' interest and concern, and we are doing the best that we can with the limited resources that we have. Literally tens of millions of dollars have been poured into researching better known cancers, whose molecular alterations continue to be unraveled.

What we know of these cancers is that specific genes are damaged in normal cells that cause them to act abnormally. Our analyses will hopefully pinpoint the areas where these abnormal genes reside on the chromosomes (like finding the country and the city that a person lives in). Then you have to go door to door on the chromosome to ask which gene is abnormal. Once you find it, this information may be useful to design diagnostic tests and to hopefully design drugs that are specific to the cancer abnormality.

Specifically, we are completing an analysis of loss on chromosome 6 in ACC. We have identified this chromosome as one of the most frequently involved in ACC. Our current data, however, have localized a region that contains many genes, so that it will be difficult to identify which among them is critically involved in tumor formation. We also just completed a study with a collaborator in Europe using a technique known as comparative genomic hybridization, and found that chromosome 12 contains an area of loss that is possibly unique to ACC. We are beginning studies to narrow down this area of deletion, and ultimately hope to localize an important gene that is lost in ACC. This technique also identified areas on chromosomes 13 and 19 that may harbor genes important in ACC development or progression.

All of our efforts take time and resources, but we plan to continue our studies for as long as we can.

References:

1. Holst VA,Marshall CE,Moskaluk CA,Frierson HF Jr:KIT protein expression and analysis of c-kit gene mutation in adenoid cystic carcinoma.Mod Pathol 12:956-960,1999.

2. Cerilli LA,Swartzbaugh JR,Saadut R,Marshall CE,Rumpel CA,Moskaluk CA,Frierson HF Jr:Analysis of chromosome 9p21 deletion and p16 gene mutation in salivary gland carcinomas.Hum Pathol 30:1242-1246,1999.