Clinical Research Forum's Award for Public Advocacy
On April 27, 2011, Sharon Terry, president and CEO of Genetic Alliance, received the Clinical Research Forum's Award for Public Advocacy. The goal of the Clinical Research Forum—comprised of the nation's most prestigious academic medical centers, professional organizations, and industry groups—is to advance translation and clinical research. While introducing Sharon, founder and past Forum Chair William F. Crowley, Jr., MD, PhD, lauded her accomplishments in this space, including the creation of PXE International, a model disease advocacy effort to engage in translational research, and the resulting gene discovery, diagnostics, and clinical trials.
Dr. Crowley praised Sharon's leadership in the passage of the Genetic Information Nondiscrimination Act, as well as her work with Genetic Alliance, particularly her contributions to transformation of the translational research and drug development systems, for which she has also received an Ashoka Fellowship. "And she even has time to tweet!" he quipped. Sharon responded, "I accept this [award] on behalf of all of us who started at the kitchen table. Advocacy has evolved, even in the past few years, and we stand as full partners with you. Your pain points are our pain points. Let's all find the advocate within and work together to alleviate suffering in the world."
Sharon was proud to share the evening with other awardees: Margaret Anderson, MA, Executive Director, FasterCures; E. Albert Reece, MD, PhD, MBA, FACOG, Vice President for Medical Affairs, University of Maryland-Baltimore and Dean, University of Maryland School of Medicine; and the Forum's current chair, Robert M. Califf, MD, Vice Chancellor for Clinical Research, Duke University Medical Center and Director, Duke Translational Medicine Institute.