Sharon Terry went from being a college chaplain and educator to a disease advocate after her two children were diagnosed in 1994 with pseudoxanthoma elasticum (PXE).

With help from Genetic Alliance, a coalition of disease-focused support groups, Terry and her husband Patrick Terry established a research advocacy organization for the rare inherited genetic condition. PXE International holds patent rights that she assigned as one of three co-discoverers of ABCC6, the transporter gene whose mutations cause the disease, which is characterized by mineralization of connective tissue.

PXE International also built a biobank and registry, the first such resources for PXE, and the first believed to have been established by a nonscientist.

“We brought that to Genetic Alliance and said, ‘Let’s expand that to many diseases, because it’s silly for another mom and dad to have to do the same thing that we’re doing,’ ” Terry told Clinical OMICs.

Terry is now President and CEO of the Alliance, which is celebrating its 30th anniversary. In the years since her children’s PXE diagnosis, she began working closely with Genetic Alliance, serving on its board for five years—two as president—before also becoming CEO in 2004.

Terry is the third person to helm the organization. The first was Joan Weiss, a social worker and genetic counselor who founded the group in 1986 as the Alliance for Genetic Support Groups. The second, Mary Davidson, led the organization’s rebranding as Genetic Alliance, its hiring of its first on-staff genetic counselor, and its launch of numerous initiatives—notably the Genetic and Rare Diseases (GARD) Information Center, now overseen by the NIH’s National Center for Advancing Translational Research.

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