The Time is Right

for Advancement in VHL Support and Research

by Jeanne McCoy, Chairman of the Board

It’s been just under 20 years since scientific researchers identified the VHL gene. This landmark discovery has led to ongoing explorations on how the genetic flaw which occurs in people with von Hippel Lindau results in tumor formation. Since the discovery of the gene, 3300 scientific articles were written on VHL, 6% of which were published within the first 9 months of 2011! Furthermore, along with this increased interest in VHL, scientific methods, diagnostic tools, and medical treatment for many types of cancer have also advanced.

Yet we, as members of the VHL Family Alliance, know there is much more work to be done! More doctors need to be educated about VHL in order to properly diagnose the disease and provide medical care. More research is essential in order to develop and offer therapies that are even more effective to VHL and non-hereditary kidney cancer patients. Past research grants provided by the Alliance ($1,300,000!) have contributed to the progress we have seen in recent years. Nevertheless, we are aware that medical research is expensive and that the Alliance needs to increase future funding. We need your financial support more than ever. Over the next five to ten years we anticipate major breakthroughs in these areas, bringing to light increased awareness, better diagnostic tools, much more effective treatments, and, yes, hopefully even a cure!

It is up to us, the consumers of VHL knowledge, to heighten the momentum. Moreover, until the day arrives that a cure is found, we need to be there for each other. We need to support each other during times of critical need and to be there for those who are recently diagnosed and searching for answers.

According to our  mission, the VHL Family Alliance is dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by von Hippel-Lindau disease. As Chairman of the Board of the VHL Family Alliance, I encourage you to help us, your “other family”, to help you. How can you use your time, talent, and treasures to promote the Mission? Together we can maximize the momentum occurring in the medical community as we continue and expand our efforts in…..

SUPPORT: We have an international network of family support groups. We can get help in person, on the telephone hotline, over the internet, and in personal gatherings.

EDUCATION: We learn from each other and with our physicians, medical teams, researchers, and general public including the VHL Family Alliance Annual Meeting and VHL Medical/Research Symposium sponsored by the Alliance.

RESEARCH:  We provide financial support to key medical research towards developing a cure for VHL and by providing tissue samples to the tissue bank.

DIAGNOSIS AND TREATMENT: We work with and encourage VHL Clinical Care Centers throughout the world.

We Need Your Help!

"We want to make sure that you get the best possible treatment today and to ensure tht better treatment options are avqailable as soon as possible."

As printed in the VHL Family Forum 19:4, November 2011. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.