Newsletter 1997

March - June - September - December -
Research Report

Click the icon to download a printable copy of the issue

VHL Family Forum: ISSN 1066-4130 Volume 5, Number 1 March 1997  Downloadable issue not available.

• Living with a Brain Tumor, adapted from U.K. Brain Tumour Action and the American Brain Tumor Association
• Brain Awareness Week observed
• Virtual Clinical Trials of Brain Tumor Treatments, sponsored by Al Musella
• New Technology to Make Speech Clearer
• New VHL Handbook
• New Technique: Laparoscopic Surgery for Pheochromocytoma, Prof. Hartmut P.H. Neumann, M.D., interviewing Prof. Günter Janetschek
• Keeping Faith, by Craig Warnick, Maryland (coping, personal story)
• Human Genome Project, by Altheada Johnson
• Prepare for Surgery, Heal Faster by Peggy Huddleston (resource)
• Grandparents, Parents, invited to submit stories
• Genetic Discrimination: What We Can Learn from History, by Paul R. Billings, M.D., Ph.D.

  There is no scientific basis to use genetic data to deny health care coverages to individuals. -- Dr. Billings

• The Long Road to Diagnosis, by Pierre B., Arizona (personal story)
• Bethesda, Here We Come! - information about the VHL Meeting May 2-4, 1997
• Focus Conference on Stereotactic Radiosurgery - May 2, 1997
• Complementary Therapies: How to Find One That Fits, reprinted from Search, the newsletter of the National Brain Tumor Foundation

  We believe there is a great possibility that people who engage with their illness and support their treatment with complementary therapies can move themselves well out to the end of the survival curve and live longer than expected. -- Don Flint, Commonweal

• Complementary Therapy Survey
• VHL Events Ahead - Meetings in Bethesda, the Netherlands, and France
• Opinion Survey about DNA Testing

VHL Family Forum: ISSN 1066-4130 Volume 5, Number 2 June 1997  Download a printable copy of this issue

• Endolymphatic Sac Tumor: Hearing Loss in VHL
  - Testing hearing, checking for possible ELST
  - Research Study Seeking People with ELST
  
  

Enhanced awareness of the association between VHL and hearing loss and ELSTs by patients and physicians and use of the diagnostic evaluations described here should allow early detection of ELSTs and hearing loss and may enhance management and prevention of hearing loss in VHL.



• Bethesda Meeting highlights - VHL Conference 97!
  - ordering conference audio tapes
• Survey Results: Attitudes Toward Genetic Testing,
  by Lisa C. Carcieri
  
  

Only 38% of at-risk people who don’t know
if they have the altered VHL gene are screened regularly.
Some respondents commented that their doctors did not know what to look for, that they could not afford screening, and that the screening was not covered by their insurance.



• Ask the Experts: "What do the terms "grade" and "stage" mean when applied to VHL kidney tumors? "
• Investment in Cancer Research, Dr. Klausner's budget for the National Cancer Institute
• Insurance and Genetic Disorders, by Paula Sicard, esq.
• Social Issues in Genetics: Gene Letter
• United Way Donor Choice
• Massachusetts meeting, by Laurel Newson, featuring a talk by Dr. William G. Kaelin of Dana Farber Cancer Institute
• England and Canada affiliates
• Board of Directors - our Thanks to retiring Board members, and welcome new!
  - Introducing Don Marshall, Publication Committee
• Audrey and Altheada honored
• About the New Handbook!

VHL Family Forum: ISSN 1066-4130 Volume 5, Number 3 September 1997       
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• Ocular Manifestations of von Hippel-Lindau (VHL) Disease,
  by Dr. Emily Chew, NIH
• Infections in Patients Treated for Brain Tumors,
  by Dr. Scott L. Pomeroy
• Seeking Feedback on Dietary Supplements
• Imaging in von Hippel-Lindau: What Have We Learned?,
  by Dr. Peter Choyke, NIH
• Report from the Dutch Symposium
• My Father, Arvid Lindau, by Jan Lindau
• Meet the Directors -
  Paula Sicard, Myriam Gorospe, and Ellen Lydon
• Gillian's Mission: to help others with VHL -
  Gillian Houlders, Hampshire, England, U.K.
• The VHL Calendar for 1998 ... a fun way to help raise research funding!!!

VHL Family Forum: ISSN 1066-4130 Volume 5, Number 4
December  1997      
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• Exploring the Faith Factor
  by Dr. Herbert Benson, Mind/Body Medical Institute, Boston
• Ask the Experts:
  • Endolymphatic Sac Tumor, reply by Dr. Oldfield
  • Air Travel and Brain Tumors, reply by Dr. Lamiell
• Teen Conference Calls
• Advocacy and You, by Don M.
  • Patient's Bill of Rights
  • Contacting Congress
• Wacky VHL Humor, by Tania D., Canada
• Sleepless in Seattle! by Alice Coday
  • Patient/Provider Conference in Seattle, June 1998
• Symposium in Paris, September 1998
• Local Meetings, reports from around the world

Kari N., Rienzi, Mississippi, won First Place in the North Mississippi District Science Fair for her exhibit on von Hippel-Lindau.

 

• British group has new leaders
• Irish Fun Run, by Maura Hurley
• VHL in Poland, by Altheada Johnson
• When's the Next Meeting?
• Meet the Directors: Renée Rosado and Madge Hall
• Ask the Family:
  • Unaffected siblings, reply by Evabeth T.
• VHLFA Annual Report, fiscal 1997
  
  
  

  I’m enclosing a donation. I admire so much the work the VHL Family Alliance does. It makes us aware that with proper monitoring we can live as long as most people, rather than dropping off like flies as our predecessors did. It makes us get on with life instead of being submerged in VHL fears. Thanks a million. -- G. R., Nepal

VHL Family Forum: ISSN 1066-4130 Volume 5, Number 5
December  1997  Special Issue    

1997 Research Report