Newsletter 1996

March - June - September - December

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VHL Family Forum: ISSN 1066-4130 Volume 4, Number 1
March 1996
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Section 1: Volume 4, Number 1 March 1996
Taking a Closer Look at Phytochemicals
Cryotherapy
Learning from VHL
Ask the Experts
Help Wanted
Dial-a-Group
Danish Association
Resources

 

Section 2: Volume 4, Number 1 March 1996
Hold that Plant!
Australia
Health Insurance
Human Genome Education
Hungary
Testing for Pheochromocytoma

VHL Family Forum: ISSN 1066-4130 Volume 4, Number 2
June 1996
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Section 1: Volume 4, Number 2 June 1996
VHLFA Research DataBase
Resources
Ask the Experts
Beating the Odds
Christopher Reeve
Brain Awareness
Survey as a Learning Tool

 

Section 2: Volume 4, Number 2 June 1996
Research Questionnaire
Living with a Rare Disorder
Hawaii Family
Tylenol & Alcohol, a Dangerous Cocktail
Committee and Board Changes
Happenings

VHL Family Forum: ISSN 1066-4130 Volume 4, Number 3
September 1996
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• The Future Holds Promise and Poblems
• Three Epochs in Managing VHL
• New Clinical Care Centers
• Guided Imagery
• Kids Supporting Kids
• Report from Hawaii
• Ethics and Genetics
• Let's Hear Your Voice
• Volunteers Honored 
• Three Siblings Deal with VHL
• Hearing Changes and VHL
• Inherited Mutations in the VHL Gene
• Funding for Research
• VHL Events Ahead

VHL Family Forum: ISSN 1066-4130 Volume 4, Number 4
December 1996
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• Know Your Mutation! by Berton Zbar, M.D., National Institutes of Health
• Research Progress - with your help! - with your help! - report on progress on crystallizing pVHL, by Dr. Diana Griffith, Massachusetts General Hospital
• Hearing Aid for VHL Patients with Bilateral Endolymphatic Sac Tumors by Marangos, Kempermann, Neumann et al.

  ...the option of cochlear or brainstem implants should be considered and discussed before tumor surgery. . . . The auditory nerve must be preserved during surgical removal of the tumor.

• Recent Insights into the Functions of the von Hippel-Lindau Protein by William G. Kaelin, Jr
• Second VHLFA Research Grant awarded to Dr. Othon Iliopoulos, Dana Farber Cancer Institute.
• Chapter Events - Michigan, Delaware, Britain, Ireland, New York, North Carolina, Mid-South, and Arizona
• Success and Recognition, by Paul B., Quebec, Canada
• Miracles, by Audrey C., North Carolina
• Plans for Conference 1997 - Bethesda, Maryland, May 2-4, 1997

  Sending a patient to do battle with his disease without any training is like parachuting a soldier into the jungle without the benefit of survival training. -- Michael Lerner, Ph.D.

• The VHL Athlete, by Jennifer K, Australia
• Eddie's Story, by Linda G., Georgia
• Gifts that Endure - bequests and charitable remainder trusts
• Reaching More People, Funding Research - VHLFA Annual report, Fiscal Year 1996