Newsletter 1998

March - June - September - December -
Research Report

Click the icon to download a printable copy of the issue

VHL Family Forum: ISSN 1066-4130 Volume 6, Number 1
March  1998      Download a printable copy of this issue

• Fifth Anniversary Issue -- What we have learned
• Childbearing Choices - a series of true stories shared by members
  with definitions and index to this series of articles
  and an excerpt from the VHLFA Policies
  • Our Healthy Baby
  • A Child of Our Love
  • Grieving and Going On
  • Having Normal Children
  • VHL and Pregnancy
  • Life
  • Roll of the Dice
  • Taking the Guilt out of VHL, by Peggy M.
• Professional Perspective, by Debra Collins, genetic counselor, University of Kansas Medical Center, Kansas City
• Mother Care
• Pre-Implantation Testing,  by Luba Djurdjinovic, Genetic counselor, Ferre Institute, Utica, NY
• Using PGT, Opinions from the MEN/VHL Conference in the Netherlands, June 1997, reported by Joyce Graff
• Meet the Board Members - Kelly Heselton, Treasurer
• Advocacy and You, part 2, by Don M.
• Cancer Defense and Sleep
• London Concert honors Tim Mason, by Marshall Marcus and Jan Mason
• Remembering Tom Werner, by Evelyn Werner
• Seattle, Here We Come!
• When's the Next Meeting
• Teen conference call

VHL Family Forum: ISSN 1066-4130 Volume 6, Number 2
June  1998      Download a printable copy of this issue

• Caution Urged for Stereotactic Radiosurgery, by Gail S., Tennessee, with Joyce Graff
  • Questions to Ask the Doctor
• At Second Glance: when the look fits, experts in ocular prosthetics shine, by John Beifuss, The Commercial Appeal, Memphis, Tennessee
• Advocacy and You, Part 3: Keeping Posted, by Don M., Mississippi
• Happy 5th Anniversary, VHL Family Alliance, by Peggy M., Mississippi
• Understanding Adopted Children and Families, reviewing The Family of Adoption by Joyce Maguire Pavao
• Seattle! Paris!
  • The special issue of the Journal of Internal Medicine on the MEN and VHL meeting in 1997 in Holland will appear in June 1998.  Altogether 26 articles will be published as well as a report on the opinion poll.
• Welcome MGH! - Massachusetts General Hospital joins the VHL Clinical Care Centers program
• Angiogenesis in the News
• A Few Words to the Wise about Nutrition, by J.E. Brody
  • Diet and Health, free booklet from NIH
• VHL Eye Care Survey, report by Joyce Graff
• Dialogue with Members
  • Teen Talk! new series of questions and answers on the internet
  • Comments and feedback
• Artist and Entrepreneur, by Pierre Jacomet, Chile
• Lifetime Achievement Award to Mike Murray
• VHL: Quest for a Cure -- new video about VHL
• Thanks to retiring Board members:
  • Lois Erickson
  • Madge Hall
• Show us your Stuff! - we are seeking art work for this year's VHL Calendar.
• God's Living Trees, a poem by Sherri D., Tennessee
• Chapter News: Michigan, California

VHL Family Forum: ISSN 1066-4130 Volume 6, Number 3
September  1998      Download a printable copy of this issue

• Retired Marine Fights for our Lives, Jay Platt, North Carolina
• Vegetables: Count on Three to Five Servings, ADA
• Hastening the Road to Diagnosis: The Role of the Broad Ligament Cystadenoma in Early Detection of VHL, by Gale P. James. Ohio
• There You Are!, Boston cabaret benefit night
• Ask the Experts
  • Draining Cysts in the Brain
  • Concerned about Eyestrain and VHL
  • Tuning Out Tinnitus
  • Ophthalmic Ultrasound
• In Your Own Back Yard, by Amy A., Louisiana
• The Sky is Falling, by Patricia F., California
• How Are You? Manage Your Own Medical Journey, review of a new book by Patricia Foote, California
• Ask the Family: Call for input on choosing DNA testing for your children
• Report from the Seattle Meeting, June 1998
• Paris Conference announcement

"Love Life, and Live Life Loving!" -- Donna Masters, Australia

• Chapter News - New Zealand, New York
• Research Grants Awarded:
  • Dr. James R. Gnarra, Louisiana State University Medical School, New Orleans, $40,000
  • Dr. Robert D. Burk, Albert Einstein School of Medicine, New York, $40,000

  The Friend Who Just Stands By -- dedicated to Jay

• VHL Video Now Available!
• VHL: Quest for a Cure: Raising Research Funds

VHL Family Forum: ISSN 1066-4130 Volume 6, Number 4
December  1998      Download a printable copy of this issue

• Report from the Paris Symposium

  There was broad agreement among the physicians present that 3 centimeters is the best guideline for when to operate on kidney tumors.

• Pioneers Needed for the New Frontier
• Managed Care
• Ask the Experts: DNA Testing
  • Should we test again? - Dr. Roberta Pagon
  • How long should it take? - Joyce Graff
• Atlanta, June 4-6, 1999, with 14.5 hours CME credits
• Maria and the Baby Seals - Maria S., Pennsylvania
• Volunteers Making a Difference
  • Help in a Crisis - Robin K., Texas
  • A Letter of Thanks - Fran M., Michigan
• Keeping Up with Jay
  • Editor's Mailbag: the 2-hit theory
• Gifts that Support Research
• Therapy for the Brain

  The observations in this study are the strongest arguments seen to date for pre-symptomatic screening for brain tumors. . . . Tumors that are extremely slow growing over years may give rise to virtually no cognitive deficits, while tumors with more "momentum", or a fast-growing cyst, may cause severe impairments.

• A Word to Grandparents
• 1999 Calendars include Member Art
• Let's Keep Up with Jay

VHL Research Report: Volume 6, Special Issue, December 1998
Download printable copy

• Thanks to you . . .
• 1998 Research Grants Awarded
• Pioneers Needed for the New Frontier
• On the Trail for VHL!
• Remember VHL in your Will
• Progress! Annual Report Fiscal 1998