Newsletter 1994

March - June - September - December

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VHL Family Forum: ISSN 1066-4130 Volume 2, Number 1
March 1994
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• Teamwork for Health: Kansas City, April 15-17, 1994

• University of Kansas Co-Hosts VHL Conference, by Debra Collins, M.S.

• My VHL Calendar, by Patti K., California

• Finding People with VHL in Slovakia, by Otakar Mašek, M.D., Ilava, Slovakia

Because of deep love, one is courageous.  -- Lao Tse

• Roberto G.'s Story, by Hartmut Neumann, M.D., Freiburg, Germany

• Families Share Diet and Exercise Tips, by Altheada J. Damon G., Peggy G., G.P., Darlene S., Mark B., Patti K., Ronald S., and Scott C.

• Scientists Unraveling Why Vegetables Retard Cancer, by Natalie Angier, The New York Times

• Our New Soybean Diet, by Darlene S., California

• Shark Warning, Editorial

• Family Gene Map

• Letters to the editor: VHL Handbook, Optometrists

• Sacred Process, by Karen Koenig

VHL Family Forum: ISSN 1066-4130 Volume 2, Number 2
June 1994
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• VHL Clinical Care Centers, by Susan Warnick

• World Focuses Attention on VHL - report from the Freiburg meeting

• Living with VHL, by Linda and Fred T., and their daughter

• Adoption and Medical History, by Joyce Maguire Pavao

• Having Babies, by Hannah N., Iowa

• VHL Gene Linked to Kidney Cancer,

  • reviewing Gnarra et al, "Mutations of the VHL Tumour suppressor gene in renal carcinoma," Nature Geentics, May 1994

• Teamwork for Health: Report from the
  Annual Meeting, Kansas City, April 15-17, 1994.

• When to Watch; When to Act?, strategies for kidney tumors, 1994

• Resources

  • Singular Vision, helpful hints for seeing with one eye

  • Adapting for Disability: vacations, workplace, adapting cars, computers

  • Kidney cancer bulletin board

  • Special education for children

• Ask the Family

  • Hiding out from VHL

  • Getting Medical Advice

• Time to Speak Up! by Polly Arango, Family Voices

• Disability and Challenge, by Fred J., New York

VHL Family Forum: ISSN 1066-4130 Volume 2, Number 3
September 1994
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• Robot Does Brain Surgery, story of Dr. John Adler's machine, Stanford, California

• Science Isn't Enough, by Dr. Charles Wilson, San Francisco

• Greetings from East Berlin, Peter and Sylvine Z., Germany

• Resources

  • Voice Activation/Recognition software

  • Options for Independence: aids for mobility and speech problems

  • Dialing the Phone

• Von Hippel-Lindau: Ocular Complications, by Lloyd Aiello, M.D., and Jerry Cavallerano, O.D.

• Driving Tips for Monocular Individuals, by Singular Vision Outreach

• DNA testing, by Professor Eamonn Maher, University of Cambridge, England

• New Board Members

  • Patti Kohlen, California

  • Peggy Marshall, Mississippi

  • Altheada LaVerne Johnson, Brooklyn, New York

  • Thomas D. Rodenberg, Missouri

• Introducing our Medical Advisory Board

  • Lloyd M. Aiello, M.D., Massachusetts

  • Debra L. Collins, M.S., Kansas

  • Haring J.W. Nauta, M.D., Ph.D., Texas

  • R. Neil Schimke, M.D., Kansas

  • Robert B. Welch, M.D., Maryland

• In Memoriam: Frau Lena Chemin-Petit, daughter of Dr. Eugen von Hippel

• FUNd Raising in Mississippi and VHLFA T-Shirts

VHL Family Forum: ISSN 1066-4130 Volume 2, Number 4
December 1994
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• Breakthrough Research

• Call for Volunteers -- VHL Protocol Angiogenesis Inhibitor Trials, by Dr. Judah Folkman and Dr. Emil Voest, Children's Hospital, Boston

• ALT for Renal Cell Carcinoma

• The Multi-Step Nature of Cancer

• Silencing the VHL Gene

• What Does all this Mean to Us?

• Karen Koenig, 1937-1994

  • Karen tells her story in poetry

• Introducing the Medical Advisory Board:

  • Dr. James M. Lamiell, Texas

  • Dr. Hartmut Neumann, Freiburg, Germany