Cancer Research Fund/VHL Family Alliance

The VHL gene is critical to tumor progression in many cancers, especially kidney cancer. We fund VHL research and improve the diagnosis, treatment and quality of life for people affected by VHL.

How do you help people in my community?

The study of VHL is helping to unlock the secrets of cancer for everyone.  Research on VHL has already made a primary contribution to better treatment for kidney cancer, and is influencing work on other cancers too.

We help people with VHL in everybody's community, worldwide.  VHL is common enough to affect every part of the world, yet rare enough that individuals affected by the disease are unlikely to know anyone else in the same situation and therefore feel isolated. To combat this problem and make sure everyone has access to a support network, every state in the USA has a chapter chair they can ask for information and support from, we also have a toll free hot line, an online discussion group and a hand book.  Our online discussions (in English, French, Spanish, German, and Japanese) are open to people by language group, worldwide. 

Why do you need my support?

Each year we use approximately half of our budget to fund Research Grants. We have raised nearly a million dollars for cancer research. While our primary focus is on the VHL gene and its role in antiogenesis, that mechanism is one of the most important keys to cancer for everyone.

There have been many exciting scientific discoveries that have improved knowledge of the genetic and biochemical mechanisms of this disease, but there remains no cure. Dr. W. Marston Linehan of the National Cancer Institute to maintain that the VHL gene holds the key to solving kidney cancer for all. Dr. Berton Zbar, a leading genetics researcher, likens the VHL gene to the Rosetta Stone, helping us decode the workings of many other cancer genes.  Further research into this disease is imperative.

We are establishing a new tissue bank which will provide the vehicle for moving research forwards, arming researchers with the raw material they need for study. We envision a tissue bank that is at the forefront of research, which will use the latest storage guidelines and meet the specific protocols of researchers. This tissue bank will be used not only for VHL research but also any other disease that would like to utilize it as a valuable research resource.

How can I be sure that you will use my money wisely and won't waste it?

Throughout our history we have ensured that at least 85% of the money collected goes directly into programs.  Most of our staff are volunteers, with a small core of paid staff providing a steady base of support for the volunteers, and taking care of our obligations to the state and national governments.  

A family in New Jersey recently raised $10,000 for VHL Family Alliance by running Lemonade Stands. This money will be matched by Alex's Lemonade Stand Foundation and we have written a proposal for "Project VHL Research Infrastructure" to ensure every single cent is put to good use. The goal of this project is to create a rich infrastructure of data and tissue for the study of VHL. Research on rare diseases is often constrained by the availability of patients and samples. This project will go a long way to eliminating such constraints.

This will encourage and facilitate research of VHL, and accelerate progress in minimizing or halting the damaging effects of this familial cancer syndrome. As VHL is one of the major keys to cancer, it should bring us closer to a cure for cancer for everyone.

Can I Volunteer? How?

We welcome volunteers and have numerous services you can help provide. These include translation, editing, raising awareness, answering the hotline, public awareness, producing materials, grant writing and anything else you have to offer! If you would like to volunteer, email us at info@vhl.org.