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Celebrating Our Directors

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Joan Sharon and Mary


(from left to right): Joan Weiss, Sharon Terry, and Mary Davidson
Genetic Alliance's 25th Anniversary Celebration in 2011


Joan WeissJoan O. Weiss 1986-1996

Joan Weiss, a social worker and genetic counselor, founded the Alliance for Genetic Support Groups in 1986. Beginning as a hotline, the Alliance was implemented as a support network for organizations dedicated to genetic and rare diseases as well as a public resource for questions about genetic conditions. Joan and her small staff worked to expand the organization over the years, hosting conferences and lectures about genetics education, policy, and how to run successful advocacy groups. Joan also became the co-director of Human Genome Education Model (HuGEM) and has published articles in numerous books and journals.

Joan Weiss retired as director of the Alliance in 1996. During her ten years of leadership, the organization grew from a hotline to a staffed venture promoting policy change, improved research, and broader public education on the challenges and promises of genetics. She has been honored at the 10th, 20th, and 25th anniversaries of Genetic Alliance and continues to work on projects with the current staff in Washington, D.C. 

Mary Davidson

Mary Davidson 1996-2003

Mary Davidson, a former Peace Corps volunteer and social worker, served as a second director of the Alliance of Genetic Support Groups during a critical period of the Alliance's history. When Mary began her directorship, a boom in attention towards genetic research and genetic diseases was being precipitated by the progress of the Human Genome Project. With a realization that the Alliance's organization required a transition to meet the challenge of genetic science in the 21st century, Mary spearheaded the creation of a thorough and comprehensive strategic plan for moving the organization into the new millennium. As part of these efforts, Mary led the rebranding of the organization, giving it the name is bears today: Genetic Alliance.

Mary tirelessly expanded Alliance programs and launched numerous initiatives; under her tenure, the Alliance, in conjunction with Aspen Systems and the Office of Rare Disease Research, launched the Genetic and Rare Diseases (GARD) Information Center. The Center was a great success, and continues to this day under the supervision of the NIH's National Center for Advancing Translational Research. Mary was also responsible for the hiring of the Alliance's first on-staff genetic counselor, a critical step in keeping the organization moving in tandem with the progress of genetic science. 

Sharon TerrySharon Terry 2004-Present

Sharon Terry became involved in advocacy after her two children were diagnosed with a rare genetic disease in 1994. Since then, she has worked tirelessly to promote public awareness and to further genetic research initiatives through her organization PXE International and later Genetic Alliance. She served on Genetic Alliance's board of directors for five years - two as president - before becoming President and Chief Executive Officer of the organization in 2004. During her tenure, Genetic Alliance has expanded its programs and partnerships. Numbering 600 in 2004, Genetic Alliance currently counts over 1,000 disease-specific organizations, as well as thousands more universities, hospitals, and research institutions in its network.

During the past decade, Sharon has published numerous articles in journals and was part of the team that discovered the PXE gene. She has a background in religious studies and has an honorary doctorate from Iona College for her work in community engagement. In 2003, Sharon co-founded the Genetic Alliance BioBank, a sample repository available to researchers to promote translational research.


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