We -- all of us -- have an exciting opportunity to significantly improve the pace of research toward better management of VHL. We need your help. If every one of us would contribute just a little bit, we can move closer to solving the riddle of VHL.

As we discussed in the September issue of the VHL Family Forum, there have recently been important strides in understanding the basic chemistry of the VHL gene and the VHL protein. Nonetheless, a "cure," the ability to repair the genetic flaw, is at least a decade away.

Meanwhile, there are a lot of people dealing with a lot of tumors, and there are some approaches we can take alongside this research which may lead to better management in the short run.

For example, it is possible that some drug could be used to replace the function of the missing protein, or to bolster the body's other natural defenses to compensate for the missing protein.

Take diabetes as an example. There is no cure for diabetes either. Without insulin, diabetes is a terrible disease. But with insulin and diet they are now able to manage diabetes pretty well.

The VHL Family Alliance has been looking for research projects with affordable price tags, where we can make a difference, encourage additional research teams to participate in VHL research, and we think we have found a good one.

One very good approach to determining what drugs might emulate or replace the function of the missing protein is to create a model of the normal protein. This is a process called crystallography. Dr. Diana Griffith, a crystallographer at the Massachusetts General Hospital and Harvard Medical School, proposes to create a model of the VHL protein. In essence, she will take purified VHL protein, create a crystal from the protein, analyze the crystal using complex microscopic techniques, and build a model, like you would build a structure from a children's building toy.

Once a model exists, it is much more cost-effective for pharmaceutical companies to undertake to try different drugs which might be effective in replacing the missing protein function. There is no guarantee of when or if we might get such a drug, but having a model should significantly increase competition, which improves the odds of finding one.

Once Dr. Griffith has gotten to the crystal stage, she would be able to qualify for a larger grant from a scientific source. But first she has to create a crystal. Her proposal to get to that stage is $50,000.

The Murray Foundation is willing to pay half, if the rest of us will pay the other half. They have issued us a challenge -- they will match up to $26,000 if we can raise the other $26,000 by January 31, 1996..

We are asking everyone to participate. This is only the beginning, only one research project. With your help, we can offer 1-2 research grants each year to increase the pace and breadth of VHL research, to find new ways of controlling tumor growth, or of treating tumors with less invasive and less risky methods.

We are getting oh, so close! Please help us raise money to find the help we all need to manage our health, and which may be the key to solving tumor conditions and cancer for everyone.

As published in the VHL Family Forum, 3:4, December 1995. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.