Introducing the Medical Advisory Board

There are twelve medical professionals on our Medical Advisory Board who may not always be very visible to you as readers, but who are very visible to the members of the Board of Directors. They very generously lend us their expertise as consultants on difficult questions from members, in the writing or reviewing of material for this newsletter, in presenting or helping design presentations for our annual meeting, and in advising us on various aspects of our programming. We continue here the introductions begun in the September issue. We have purposely sought out people with depth and breadth of experience with VHL -- people whose formal training has been enriched by working with a number of patients with VHL over a number of years.

Col. James M. Lamiell, M.D.,
San Antonio, Texas

Dr. Lamiell is a Colonel in the Medical Corps of the U.S. Army, serving as Chief of the Department of Clinical Investigations at Brooke Army Medical Center in Fort Sam Houston, Texas. He graduated from the Massachusetts Institute of Technology (MIT), and earned his M.D. from the University of Colorado School of Medicine. He also holds a Master of Computer Science from the University of Texas and is working on a degree in mathematics.

He has earned a number of awards and decorations from the armed services, including the Distinguished Flying Cross and the Vietnam Cross of Gallantry with Palm Leaf.

It was during his service at Tripler Army Medical Center in Hawaii 1977-1980 that he was asked to see a woman with polycystic kidney disease (PCK) who claimed her family had von Hippel-Lindau disease. At first they thought she had both VHL and PCK, but eventually they realized that her kidney condition was also VHL. He joined with Dr. Y. Edward Hsia at the University of Hawaii to study all members of this family, both military and civilian. Their study became one of the first and one of the largest systematic studies of a VHL kindred, and initiated the genetic screening work which laid the foundations for the genetics work now going forward at the National Institutes of Health.

"Without question, Hawaiian VHL family members are among the bravest people and patients I have known. As a group, they face the adversity of VHL with admirable courage. After knowing this VHL family and observing them over 15 years, I have learned that although VHL cannot be cured, it can be effectively managed provided all involved have sufficient VHL knowledge, honesty to face VHL problems, and courage to prevail against VHL."

Dr. Lamiell has published widely on VHL 1978 to present, including "Segregation and linkage analysis of von Hippel-Lindau disease among 220 descendants from one kindred" (Amer. J. of Human Genetics, 36:131, 1984); "Von Hippel-Lindau disease maps to the region of chromosome 3 associated with renal cell carcinoma" (Nature, 332:268, 1988); and "Von Hippel-Lindau disease affecting 43 members of a single kindred" (Medicine 68:1, 1989).

He continues to be involved with VHL education. "Few health care providers have experience with VHL, so their VHL knowledge is often inadequate. VHL patients and their families cannot sensibly deal with VHL unless they know what to expect." Dr. Lamiell spoke and participated in the VHL Patient/Provider Conference in Kansas City earlier this year. "The organization has grown and matured considerably, and is very important for those affected by VHL. It is safe to say the VHLFA will endure. Good work!"

Hartmut P. H. Neumann, M.D.,
Freiburg, Germany

Dr. Neumann completed his medical degree and thesis at the University of Bonn and the University of Heidelberg, completing his Germany medical degree of Privatdozent Dr. med. He holds multiple specializations, with degree in General Medicine, Pathology, and Internal Medicine, and subspecialties with degrees in Nephrology and Endocrinology.

Until 1983 he worked at the Institute of Pathology, City Hospital, Ludwigshafen (Rheinland). Since 1983 he has been at the Albert-Ludwigs University in Freiburg (Breisgau), Department of Medicine, Division of Nephrology and Hypertension.

His primary research project there is on inherited diseases affecting the kidney, and inheritance of hypertension.

Since 1989 he has built up one of the largest studies on von Hippel-Lindau syndrome in the world in the last decade, consisting of 120 patients with VHL. His publications have appeared in the New England Journal of Medicine, the Lancet, Gastroenterology, the journals of Neurology, Neurosurgery, and Psychiatry, the Journal for Neurosurgery, and others. He has presented papers at the congress of the American Society of Nephrology, the International Congress of Nephrology, the International Congress of Human Genetics, and the Congresses of the German Societies of Endocrinology and of Nephrology.

He has lectured on von Hippel-Lindau disease at Massachusetts General Hospital, Boston; Columbia University, New York; Memorial University, St. John's, Newfoundland; Dalhousie University, Halifax, Nova Scotia; University of California, San Diego; Fox Chase Cancer Center, Philadelphia; Johns Hopkins University Medical School, Baltimore; the National Institutes of Health, Bethesda, Maryland; and at the VHL Family Alliance meeting in Kansas City in April.

He organized and co-chaired the First International Symposium on VHL in Freiburg in May 1994. His tireless efforts have helped to bring a new level of attention to VHL throughout the world.

Dr. Neumann was recently awarded the Franz Volhard prize for outstanding contribution to the field of Nephrology by the Society of Nephrology (Gesellschaft für Nephrologie) of the German-speaking countries, for his work on von Hippel-Lindau disease and inherited hypertension. In his speech to the Society, he mentioned the work of "der großartigen VHL Family Alliance, einer sehr aktiven Familieninitiative" (the magnificent VHL Family Alliance, a very active family initiative) in locating and informing families with VHL.

As published in the VHL Family Forum 2:4, December 1994. For permission to reprint, please contact the VHL Family Alliance at editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.