Spokespeople for the Proteus Syndrome Telebriefing
Proteus Syndrome Telebriefing, July 27, 2011
Eric D. Green, M.D., Ph.D.
, is director of NHGRI, the largest organization in the world solely dedicated to genomic research. For two decades, Dr. Green has been at the forefront of efforts to map, sequence, and understand the genomes of eukaryotes - organisms with membrane-bound nuclei, including significant, start-to-finish involvement in the Human Genome Project. He earned an M.D. and Ph.D. in cell biology from Washington University School of Medicine in St. Louis.
Leslie G. Biesecker, M.D.
, is chief and senior investigator of the NHGRI Genetic Disease Research Branch. Dr. Biesecker's research focuses on clinical and molecular distinctions of human malformation syndromes. His laboratory is working on two classes of disorders: syndromes with multiple congenital anomalies and overgrowth disorders. He is principal investigator of the NHGRI's study of Proteus syndrome and related congenital disorders to determine the natural history and etiology of Proteus syndrome. He holds an M.D. from the University of Illinois College of Medicine.
is founder and executive consultant, Proteus Syndrome Foundation USA. She founded the organization in 1992 to support and educate families and to raise money to support research to find the cause of and cure for Proteus syndrome. Kim is mother of three children; Alex, who was born with Proteus syndrome and passed away in 1999 at the age of 9 from complications of the syndrome, Cooper and Ian. She currently works as a marketing director in Colorado Springs, Colo., and continues to raise funds and direct the Proteus Syndrome Foundation, USA.
is chairperson of the Proteus Syndrome Foundation, UK. She lives in Bexhill, UK, and her son Jordan, 16, has Proteus syndrome. She founded the registered charity in 1996 after bringing Jordan to the National Institutes of Health as a participant in the Proteus syndrome research study. The charity and support group, which she runs in her spare time, helps families in the UK and Europe by providing grants, publishing newsletters, disseminating medical information and holding conferences.
Larry J. Thompson, M.S., M.F.A.
, is chief of the Communications and Public Liaison Branch at the National Human Genome Research Institute (NHGRI). His team manages media relations and creates a wide range of communications products, including websites, multimedia presentations and documentaries. He co-founded the Washington Post's
Health section and the San Jose Mercury News
' Science and Medicine section. He holds an M.S. in molecular biology from Lehigh University and an M.F.A. in film and electronic media from American University.
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Last Updated: May 2, 2014