This is just a brief message to thank you for the most complete and effective website I've visited. As a Clinical Geneticist, I'm constantly searching for clear, concise information for my patients and for my own use. You certainly exceeded my expectations.
-- Patricia Gordon, M.D., St. Jude’s Children’s Cancer Research Center, Memphis, Tennessee

from Don M., Vice Chair, VHL Family Alliance

The VHL Family Alliance welcomes the new millennium with renewed hope for a treatment for those people with von Hippel-Lindau Disease. Since our beginning in 1993 we have provided over a quarter million dollars to research teams focusing on the complexities of VHL. These research teams have been fast approaching the solution to finding a way to reduce the effects of VHL manifestations and identify the best means to treat VHL.

We are now reaching over 10,000 people directly affected by VHL. Our International Web site www.vhl.org has seen over 15,000 visits this past year. A visitor can find current information on the management and new treatments for VHL. One can find local support groups, Clinical Care Centers, and get answers to questions regarding living and dealing with the diagnosis of VHL.

Over 1,000 calls are answered annually on our Patient Support Line, 1-800-767-4VHL. Callers reach one of four VHL-affected volunteers who can relate directly to their needs and provide assistance in finding information, discussing health issues, locating local support people, and individual support. Support groups exist on the internet at egroups, and in 27 State Chapters and 16 International affiliates, in thirteen languages.

The year 2000 marked the Third International Symposium and Seventh Annual Patient Provider Conference held at Mayo Clinic in Rochester, Minnesota. Over 200 patients, family members and physicians attended the three and one half-day conclave. Participants from Australia, Belgium, Brazil, Canada, Denmark, England, France, Germany, Italy, Japan, the Netherlands, Poland, Sweden, Switzerland, and of course the United States joined together to share current research information and the latest techniques for diagnosis and treatment of VHL disease.

Dr. Virginia Michels, M.D., of the Department of Genetics at the Mayo Clinic in Rochester, Minnesota, and Medical Chair of the Symposium, declared that "Our accumulated knowledge about the VHL protein and its associated proteins and enzymes will lead to some major breakthroughs in the new millennium for treatment of VHL disease." One family in attendance gained insights into their own family’s situation that saved the lives of a young mother and her baby only weeks after the conference.

Neatha D., celebrating her 70th birthday this year said, "Medical technology and treatment of VHL disease has ‘come a long way, Baby!’, since my diagnosis 36 years ago." We now have many members who have outlived the earlier predictions and we will be adding focus to their needs.

The year 2000 has begun a renewed effort to raise awareness of VHL and to emphasize the need to raise more funds for research in management of VHL. Your continued support in this research effort is deeply appreciated.

We need your help to spur research and testing and find ever better answers. Together we can achieve the extraordinary!

-- Don M., Vice-Chair, VHL Family Alliance

As printed in the VHL Family Forum special Research Report, 8:5, December 2000. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.