FORA.tv Speaker - Sharon Terry

Sharon F. Terry is President and CEO of the Genetic Alliance, a network transforming health by promoting openness as process and product, centered on the health of individuals, families and communities. She is the founding Executive Director of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). Following the diagnosis of their two children with pseudoxanthoma elasticum (PXE) in 1994, Terry, a former college chaplain, and her husband, Patrick, founded and built a dynamic organization that enables ethical research and policies and provides support and information to members and the public. Along with the other co-inventors of the gene associated with PXE (ABCC6), she holds the patent for the invention, and with the assignment of all rights to PXE International, is its steward. She co-directs a 33-lab research consortium and manages 52 offices worldwide for PXE International.

Ms. Terry is also a co-founder of the Genetic Alliance Biobank. It is a centralized biological and data repository catalyzing translational genomic research on genetic diseases. The BioBank works in partnership with academic and industrial collaborators to develop novel diagnostics and therapeutics to better understand and treat these diseases.