Sharon Terry, MA 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, Sharon, 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. She is at the forefront of consumer participation in genetics research, services and policy and serves as a member of many of the major governmental advisory committees on medical research, including the HIT Standards Committee for the Office of the National Coordinator for Health Information Technology, liaison to the Secretary’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children and the National Advisory Council for Human Genome Research, NHGRI, NIH. She serves on the boards of GRAND Therapeutics Foundation, the Center for Information & Study on Clinical Research Participation, The Biotechnology Institute, National Coalition of Health Professional Education in Genetics, and the Coalition for 21st Century Medicine. She is on the steering committees of Genetic Association Information Network of NHGRI, the CETT program, the EGAPP Stakeholders Group, and the editorial boards of Genetic Testing and Biomarkers, and Biopreservation and Biobanking, and the Google Health and Rosalind Franklin Society Advisory Boards. She is the chair of the Coalition for Genetic Fairness that was instrumental in the passage of the Genetic Information Nondiscrimination Act. She is a member of the IOM Roundtable on Translating Genomic-Based Research for Health. In 2005, she received an honorary doctorate from Iona College for her work in community engagement and haplotype mapping; in 2007 received the first Patient Service Award from the UNC Institute for Pharmacogenomics and Individualized Therapy; and in 2009 received the Research!America Distinguished Organization Advocacy Award. She has recently been named an Ashoka Fellow. Terry is committed to personal transformation as a catalyst for the systems change needed to improve health and wellness. She lives with her husband Patrick and their two children in Maryland. |
