Paula M. Sicard, Chairing the Insurance and Legal Issues Committee, has been involved with the VHL Family Alliance since its inception and is caretaker for an individual afflicted with most of the disease’s known manifestations. Paula resides in Tampa, Florida, where she is law clerk to the Honorable Thomas E. Baynes, Jr., United States Bankruptcy Judge. Paula received her J.D. degree in 1986 from the University of Florida having served as Editor-in-Chief of the Law Review and President of Omicron Delta Kappa scholastic honor society. After a two year clerkship with Justice Ben F. Overton at the Florida Supreme Court, she entered private practice, specializing in commercial litigation and bankruptcy/creditors’ rights. Paula was a member of the Editorial Board of the Florida Bar Journal for several years prior to her recent appointment to a three-year term on the Federal Court Practice Committee of the Florida Bar. She is also a member of the Board of Directors of the Small World Zoological Gardens, a non-profit sanctuary dedicated to the captive conservation of endangered new world primates, and is a surrogate parent to two orphaned cotton-top tamarin monkeys.

Myriam Gorospe, Ph.D.

Myriam Gorospe, chairing the Research Committee, was born in San Sebastián, in the Basque region of Spain, in 1967. She grew up in Madrid, the eldest of six, with one sister and four brothers. In 1985 she entered the Universidad Complutense de Madrid, Spain, and graduated in 1990 with a degree in biology. Later that year she joined the Graduate Program in Cell and Developmental Biology at the State University of New York in Albany. After obtaining her doctoral degree in 1993, she joined the Institute on Aging of the National Institutes of Health in Baltimore. Since then she has been investigating various aspects of how cells respond to stress and to proliferative signals.

"My mother’s family is affected with von Hippel-Lindau. Even though no parent was ever diagnosed, her sister and brother died of VHL cerebellar hemangiomas, and another brother and two of his children are extensively affected with the disease. I came across the VHL Family Alliance in an effort to provide some information for my uncle and cousins. I also had to translate this information, and I have since enjoyed translating a few other documents from the VHLFA (not as many as I would like, though). I think the Alliance is doing a terrific job, very relevant, helpful, sensible, beneficial and constructive. I think it is putting its efforts in the right areas. Finally, I think it is wonderfully managing the difficult task of being in intimate touch both with the families and their needs and with the intricacies and complexity of biomedical and clinical research."

To ask a research question, or to inquire about our research grants application procedures, see http://www.vhl.org and choose the Research option, or write to research@vhl.org

Ellen Lydon

Ellen Lydon, Chairing the Clinical Care Committee, lives in Oak Forest, Illinois, with her husband Robert and their four-year-old daughter Cristine. Ellen is a registered nurse with expertise in mechanical ventriculation. Before the birth of their daughter, she worked as an RN on an oncology unit for nine years.

Robert was diagnosed with VHL in 1995. Both Ellen and Robert were delighted to find an organization that was "dedicated to improving diagnosis, treatment, and quality of life for people with von Hippel-Lindau disease." Together they chair the Illinois chapter of the VHL Family Alliance.

Ellen’s goals are to update the current list of doctors serving in each of the Clinical Care Centers, to establish some new Centers, and to develop a feedback mechanism for memers who use the services of any of these centers either as a primary care site or as a source of second opinions. She will appreciate your ideas and feedback on your own experiences. Do you find it helpful to have this list of centers knowledgeable about VHL? Have you been able to find the assistance you needed through these channels? Write to Ellen at clinics@vhl.org

As published in the VHL Family Forum 5:3, September 1997. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.