ASHG Honors Sharon Terry, MA with the 2021 ASHG Advocacy Award

Published: Monday, July 12, 2021, 12:00 p.m. U.S. Eastern Time

Media Contact: Krystal Foster, 631-946-0740

Sharon Terry, MA, Recipient of the 2021 Advocacy Award
Sharon Terry, MA, Recipient of the 2021 Advocacy Award

ROCKVILLE, MD – The American Society of Human Genetics (ASHG) has named Sharon Terry, MA as the 2021 recipient of the Advocacy Award. Terry is president and CEO of the Genetic Alliance, an organization engaging individuals, families, and communities to transform health. The Genetic Alliance works to provide programs, products, and tools for ordinary people to take charge of their health and to further biomedical research.

“It is an honor to present Sharon Terry with ASHG’s 2021 Advocacy Award,” ASHG President Gail Jarvik, MD, PhD said. “She has been an exemplary advocate at the Genetic Alliance on behalf of people with genetic diseases, and has improved access to information and representation for individuals, families and communities from around the world.”

This award, which includes a plaque with a $10,000 prize, honors individuals or groups who have exhibited excellence and achievement in applications of human genetics for the common good, in areas such as facilitating public awareness of genetics issues, promoting funding for biomedical research, and integrating genetics into health systems.

“Sharon Terry is the epitome of advocacy for human genetics and genomics on an international stage,” said Robin L Bennett, MS, CGC, Director, University of Washington Genetic Counseling Graduate Program, in her nomination letter. “She has led the Genetic Alliance to advance global genetic research agendas toward health benefits for all by engaging a broad range of stakeholders, including healthcare providers, researchers, industry professionals, public policy leaders as well as individuals, families and communities.

Ms. Bennett concludes her nomination letter by noting “Her expertise and guidance has been sought by many prestigious policy organizations such as the Institute of Medicine. She is a tireless advocate for biorepositories, registries, translational research, patient rights to their genomic information, orphan drugs and open access to genetic research information. If I picked one word to describe Sharon, it would be luminary. She is an inspiration to anyone she touches, and her reach has been into almost every new area of genetics and genomics research, policy and health.”

As ‘just a mom’ with a master’s degree in Theology, she cofounded PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), in response to the diagnosis of PXE in her two children in 1994. She established the first ever lay managed biobank, registry, IRB, and research consortium, and as a result co-discovered the ABCC6 gene and has initiated clinical trials. Quickly applying what she learned about one disease to all diseases, she scaled, commoditized, and offered these and other advocacy tools to thousands of organizations.  For more than a decade, she led the coalition that was instrumental in getting the Genetic Information Nondiscrimination Act passed. Her TED talk has been viewed more than a million times.

Although ASHG made the decision to host the Society’s annual meeting virtually, the exact timing of the Advocacy Award Presentation is not yet known. An update will be provided as soon as information is available.

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About the American Society of Human Genetics (ASHG)

Founded in 1948, the American Society of Human Genetics is the primary professional membership organization for human genetics specialists worldwide. Its nearly 8,000 members include researchers, academicians, clinicians, laboratory practice professionals, genetic counselors, nurses, and others with an interest in human genetics. The Society serves scientists, health professionals, and the public by providing forums to: (1) share research results through the ASHG Annual Meeting and in The American Journal of Human Genetics; (2) advance genetic research by advocating for research support; (3) educate current and future genetics professionals, health care providers, advocates, policymakers, educators, students, and the public about all aspects of human genetics; and (4) promote genetic services and support responsible social and scientific policies. For more information, visit:

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