There are now new computer chips that can test 10,000 genes at a time to tell which ones are “on” or “off”. When they test 20 samples, they see a pattern beginning to emerge, but they don’t yet know if that is a pattern common to all people with VHL, or all people with kidney cancer, they only know that it is true for the 20 samples they have tested.

If they are able to test 200 samples, they get a much better idea of whether this pattern is true across the population. We need to help provide 200 or more samples for them to test. The more we understand how these basic mechanisms work, the more possible it is for the drug companies to design a drug to fix the problem. With this information, we might be able to choose the most effective drug for a particular person before the treatment begins.

Please remember whenever you are having surgery, that you have an opportunity to contribute the surgically removed tissue to the tissue bank and help speed up the research. No extra tissue is taken. We are assembling a checklist of things to remember before you go for surgery, and one of them is to register with the tissue bank. You are the only one who can provide tissue for research.

For details as they develop, see vhl.org/bank

We are looking to move our existing tissue bank, to expand its capabilities. The new VHL Tissue Bank will cost about $15,000 a year. A donor willing to make a commitment in that dimension will have a chance to name the bank. Call the office for details.

Note: The Special Projects of Research Excellence (SPOREs) are multi-year multi-million dollar grants from the National Cancer Institute to research partners throughout the United States. While there are multiple SPOREs for breast and prostate cancer, there is only one SPORE for kidney cancer, at the Dana Farber/Harvard Cancer Center, a research consortium of major hospitals in Boston. Dr. Michael Atkins of Beth Israel Deaconess Hospital is the head of the Renal SPORE. See http://dfhcc.harvard.edu/renalcancer.

As printed in the VHL Family Forum 14:1, April/May 2006. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.