The medical professionals listed on page 14 may not always be very visible to you as readers, but they 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 previous issues.

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.

Yujen Edward Hsia, M.D.

Born in Shanghai, China, Dr. Ted Hsia (pronounced Shaw) studied at Oxford University and began his medical career in England, at the London Hospital. He taught for five years in medical school in Malaysia, and ten years at Yale University, before settling in Honolulu where he heads the departments of Genetics and Pediatrics at the Kapiolani Medical Center, and teaches at the John A. Burns School of Medicine.

In his early days in Hawaii he joined with Drs. Lamiell and Salazar to study a large family with a hereditary pattern of kidney cancer, which proved to be VHL. Their mapping of 220 members of a single VHL family [Am J Med Genet, 36:1310142, 1984] was the groundwork for the genetic research reported in this issue. He has published widely on issues of genetic counseling, neonatology and birth defects. With Drs. Neumann, Lips and Zbar he published a recent survey of VHL [Brain Pathology 5:181-193, 1995.]

Dr. Hsia continues to care for the Hawaii family. He is chairing the 1996 VHL Symposium and Conference in Honolulu [see page 5].

Allan E. Rubenstein, M.D.

A graduate of Cornell University in 1966, Dr. Rubenstein completed his medical training at the University of Rochester School of Medicine, Tufts University School of Medicine, and Columbia-Presbyterian Medical Center in New York City. He is certified in Psychiatry, Neurology, and Neuroimaging.

He has been with the Mount Sinai Hospital since 1974, and holds concurrent appointments at Beth Israel Hospital and Catholic Medical Center of Brooklyn and Queens. He teaches neurology at the Mount Sinai School of Medicine.

Dr. Rubenstein co-founded the National Neurofibromatosis Foundation in 1978 and still serves as its Medical Director. He established the first interdisciplinary clinic devoted to neurofibromatosis (NF) in the world. The clinic has been a model for over 25 other NF clinics in the U.S. and Europe. The clinic at Mount Sinai now has the largest NF population in the world. The clinical care centers of the National Neurofibromatosis Foundation have served as models for our own VHL clinical care centers.

Neurofibromatosis and VHL are classed together in a group of diseases called phakomatoses, all of which have a wide variety of symptoms including cysts and tumors involving the central nervous system. Dr. Rubenstein has written and presented world-wide on neurofibromatosis and the phakomatoses. His experience and expertise in multi-disciplinary clinical care centers have been particularly helpful to our Clinical Care Program.

As published in the VHL Family Forum, 3:3, September 1995. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.