It is time once again to renew our memberships in the Alliance and our commitment to finding answers to VHL. This year for the first time VHL appears widely in the press. While the characterization of VHL is not always what we would wish, we can all work to balance it. In this issue of the newsletter you will see some of the ways the worldwide VHL community is rallying to this opportunity. May we send you a press kit to use locally?

The world is also becoming aware of the many risks hiding in our genes. Ten years ago Dr. Francis Colllins, head of the Human Genome Institute at the U.S. National Institutes of Health projected that within ten years the Human Genome Project would disclose that everyone has at least one significant genetic risk factor. I asked him recently how many people in the general population are carrying some genetic risk factor for cancer. He thought about it, and gave me a rough estimate that one person in 300 carries one of the highly heritable genetic risk factors for cancer. Add to that the more weakley inherited genetic risk factors for other diseases that we are seeing each day in the press, and it’s already nearly 100%. As he predicted years ago, the knowledge we have gained through the Human Genome Project is giving us information that is going to be difficult to deal with -- foreknowledge of medical risks that must be managed or they could seriously harm us. We are all wrestling with the ethical, legal, and social implications of that knowledge.

But for us in the VHL community, it is comforting to know that we are not alone. Those of us with VHL have been doing what countless others will now be called up to do -- living with the knowledge that cancer may try to come into our lives. It is up to us to manage it. And we are managing it with ever greater success, living with cancer as a chronic illness. I believe we can be justly proud of what we have accomplished.

All the progress we have made is due to a coalition of effort:

to you and all those who contribute dollars,
to all the many volunteers worldwide who contribute so much of their time and talent,
and of course to the expertise and care of the many physicians and researchers throughout the world.

This year we have received another eight research proposals. We are delighted to see this continuing level of interest in working on VHL. We are excited at the opportunity to encourage more young researchers to undertake VHL research. We have a challenge gift to meet by June 20. Please help to support VHL research and education by paying your dues of $25 per year, which covers the mailings we send you. If everyone pays their dues, we will be able to fund one more grant. Anything additional goes to meet the challenge! Please help us meet this challenge, and perhaps fund one more additional grant.

It is only through the generosity of our supporters and our volunteers that we exist. We have new opportunities to keep people healthier longer. The Handbook is helping patients and their local doctors do better routine screening and have more constructive discussions about optimal treatment. Through new research discoveries we hope to see within the coming decade ways to keep new tumors from ever forming.

Please Act Now!

And it’s exactly because we have achieved so much already together that we ask you to continue your support, and to help us to reach new donors. If every family would help us raise at least $100, we would more than meet our goal.

Many thanks and all best wishes for a happy, healthy year ahead,

Joyce

As printed in the VHL Family Forum 15:2, May 2007. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org Further information is available from the VHL Family Alliance, info@vhl.org.