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

Melissa T. of Texas is preparing for the USA Lake Placid Ironman Triathlon, 2005.

She is running to raise money for VHLFA, in honor of her father. “His determination and positive outlook on life is amazing despite what he has been through with his health. He is my inspiration behind the Ironman.”

Track her progress at
www.vhl.org/ironwoman

As printed in the VHL Family Forum 12:2, August/September 2004. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

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