Newsletter 2004

March/April - August/September -
Annual Report - December

VHL Family Forum, ISSN 1066-4130 Volume 12, Number 1
March/April  2004 Download a printable copy of this issue 

• Coping with VHL, by Gary Wood, Psy.D., Tampa, Florida

• Update on Clinical Trials

• Thank God for my Family, by Alexandra Morais, New Jersey

• Spanish Language hotline services

• Doctors attack 'benefits' of low-carb diets

• Pre-symptomatic DNA testing for Children, by Sharon Terry, Executive Director, Genetic Alliance

• Preventing Infection

• LoriAnn's Gift, by Janice J., New Jersey

• Age-Related Macular Degeneration, by Altheada Johnson, MA, RD

• VHL Connections! -- Forthcoming meetings in

• Charlotte, North Carolina, April 17, 2004

• Dallas, Texas, April 24, 2004

• Annual Meeting, New York, June 19, 2004

• Medical Symposium, Kochi, Japan, May 20-22, 2004

• Whistler, British Columbia, June 25-26, 2004

VHL Family Forum, ISSN 1066-4130 Volume 11, Number 2
August/September 2004 Download a printable copy of this issue

• Endolymphatic Sac Tumors in von Hippel-Lindau, reporting three new articles by Russell R. Lonser, M.D., et al.

• VHL Meeting in Denmark, by Vibeke Harbud, Chairman

• New Renal SPORE in Boston, by Michael Atkins, M.D.

• Wedding Celebration, by Ashlee P., Saskatchewan

• New Clinical Care Center in Nashville, Tennessee

• Melissa T. of Texas prepares for the Lake Placid Triathlon 2005

• Research on Fatigue

• More than 500 Mutations found in the VHL gene

• New Leadership for VHL France

• New Country Affiliate in Switzerland

• Pre-Implantation Genetic Diagnosis (PGD) for VHL, by Wendy K. Chung, M.D., Ph.D., New York

• Update on Clinical Trials

  • Kidney Pre-surgery clinical trial

  • Eye Lesions

  • Research project needs Fetal Tissue

• Caution before taking Herbal Remedies

• Woman hopes to Educate Doctors, by Scott Rockefeller, Binghamton, New York

• Songs of Love for Children

• Report from the VHL Symposium, Kochi, Japan

• VHL in China, Guangzhou and Beijing

• Birthday Fundraiser in Canada, by Trish B., Alberta

• Inspirational Gifts

VHL Family Forum, ISSN 1066-4130 Volume 11, Number 3
Annual Report issue November 2004 Download a printable copy of this issue

• Stronger Base, Reaching Outward - Please join us!

• Dr. Judith Frydman wins award - Dr. Judith Frydman, Stanford University

• 2004 Research Digest - Joseph M. Verdi, Ph.D., Director of Research

• 2005 Goals of the VHLFA Board

• Challenge! Your Gift Goes Farther!

• Volunteers Making a Difference -

  • Altheada J., New York

  • Robin K., Texas

  • Gale L., Florida

  • Fran M., Michigan

• Remember VHLFA in your Will

• Gifts of the Artists - For a gift of $150 or more, you can choose one of these wonderful performances as your free gift.

VHL Family Forum, ISSN 1066-4130 Volume 12, Number 4,

December 2004 Download a printable copy of this issue

• Improving Diagnosis of VHL - Results from our Survey

• New Handbook, by Joyce Graff, Editor

• Allergies to Contrast Media, by Peter L. Choyke, M.D., U.S. NIH

• His Valiant Battle: Lt. Col. John Rainier, by Ellen R., Indiana

• Hope and Life-Saving Action, by Melissa K., California

• Healthy Kidneys, by Tammy M., Pennsylvania

• My Miracle Baby, by Amy W., R.N., Kansas

• Memphis Meeting: raising diagnosis in the Mid-South

• Educating Congress

• Calendar of Meetings 2005

• The Nordic Workshop

• Going for the Gold! Meet the Janus Challenge!

• Gifts of the Artists - For a gift of $150 or more, you can choose one of these wonderful performances as your free gift. Help us meet the Janus Challenge!