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  • Chief Cushie

Are these Tumors Connected?


BOSTON, May 19 /PRNewswire/ -- Jenny has a vascular brain tumor called a hemangioma.  Uncle Ken has kidney cancer.  Aunt Margaret is blind.  Cousin Jim has an adrenal tumor called a pheochromocytoma.  What do all these tumors have in common?  They are in the same family of people, and in fact they are in the same family of disease -- they are all caused by a flaw in one gene, the VHL gene.


May is National VHL Awareness Month.  The VHL Family Alliance is the only national organization dedicated to improving the lot of people with von Hippel-Lindau (VHL).  This year marks the Tenth Anniversary of this strong volunteer organization, working to cure cancer.


VHL is a hereditary cancer predisposition syndrome -- like hereditary breast and colon cancer, VHL can lead to kidney or pancreatic cancer.  With early diagnosis, and appropriate treatment, however, people today have a very good chance of avoiding the worst consequences of cancer. Research on the VHL gene has proven to be key to understanding how cancer works for everyone.


"The Good Lord left us some clues," says Joyce Graff, Chairman of the Alliance.  "By studying some of the rare diseases over the last ten years, we have learned a great deal about how cancers begin and grow."  For example, changes in the VHL gene are responsible for 85% of kidney cancer in the general population.


We are just now on the brink of an era where new drugs can intervene and slow or reverse the growth of cancer tumors in a number of conditions, including kidney cancer.  For families with VHL, this news provides a glimmer of hope that perhaps by the year 2010 there will be a medication to stop, or at least slow down, the growth of new tumors. Families and medical professionals have joined forces in the VHL Family Alliance to share information with one another, provide morale support and work toward furthering our understanding of VHL and all other kinds of cancer.


VHL may allow tumors to form in the retina, brain, spinal cord, kidney, pancreas, or adrenal glands.  People who have tumors in their family, especially hemangiomas, in two or more of these areas should ask their physicians about VHL.  For more information about VHL, please contact the VHL Family Alliance, 1-800-767-4VHL, or info@vhl.org.


For further information about von Hippel-Lindau disease:  


Connect to the VHLFA Home Page at URL http://www.vhl.org


Broadcast-quality video interviews available on request from:  


Cary J. Schwanitz, News Desk  


KOAT-TV, Albuquerque, NM  




Online press kit:  




SOURCE  The VHL Family Alliance  

CO:  The VHL Family Alliance

ST:  Massachusetts





05/19/2003 05:20 EDT

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