Newsletter

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