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Canadian VHL Family Alliance

Canadian VHL Family Alliance

VON HIPPEL-LINDAU DISEASE is an inherited multi-system disorder characterized by abnormal growth of blood vessels. While blood vessels normally grow like trees, in people with VHL little knots of blood capillaries sometimes occur. These knots are called angiomas or hemangioblastomas. Growths may develop in the retina, certain areas of the brain, the spinal cord, the adrenal glands and other parts of the body.

The gene for Von-Hippel Lindau disease (VHL) is found on chromosome 3, and is inherited in a dominant fashion. If one parent has a dominant gene, each child has a 50-50 chance of inheriting that gene. The VHL gene is a tumor suppressor gene. This means that its role in a normal cell is to stop uncontrolled growth and proliferation. If the gene is lost or mutated, then its inhibitory effect on cell growth is lost or diminished, which, in combination with defects in other regulatory proteins, can lead to cancerous growth.


Like the Rb tumor suppressor gene, VHL seems to act as a 'gatekeeper' to the multistep process of tumorigenesis. Although unrelated to any other known family of human proteins, homologs to human VHL are found in mice and rats. Experiments using these animals as model organisms for the human disease are helping researchers discover the normal physiological role of VHL, which will through light on its mechanism of pathogenesis. Initial results suggest that VHL may play a role in regulating exit from the cell cycle.

The VHL Family Alliance began as a support group in the United States in 1993 with just three members. Today that number has risen to over 2500 volunteers, physicians and scientists spanning the globe. Our Canadian affiliate became a charitable organization in 1998 with only three members. Today, our membership database in Canada tops 125. The Board consists of six members, and three Chapter Chairs, all of whom are volunteers..

Thank you to everyone that came out and supported our 2nd Annual GIMALLY for VHL on Saturday Oct. 30th, 2016. As always, we thank you for and very much appreciate your continued support. The event was a great success and fun was had by all!

And another big thank you to those that supported our 2nd annual 10-pin Rock and Bowl in memory of Bill Lamb on Saturday November 13th, 2004. Once again it proved to be a great success, but as always, we could not have done it without all of you!

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