Giving power to the people

Grassroots efforts depend on layers of organization – an individual with a need and a vision, a community with passion and drive, and a coalition to pool resources and affect social change. When your cause is focused on a genetic condition so rare most doctors have never seen it, making the necessary connections can be even more difficult. One look at the biography of Sharon Terry, president and CEO of the Genetic Alliance, and it is clear that she understands this firsthand.

Terry first became involved in genetic advocacy as a concerned but empowered mother in 1994, when her two children were diagnosed with the rare genetic condition pseudoxanthoma elasticum (PXE). She and her husband launched an advocacy organization, PXE International, to link families, provide information and resources, and advocate for research. As a direct result of the efforts of affected families, the causative gene, designated ABCC6, has been discovered recently. For the first time ever, a gene patent will be held by a patient advocacy organization.

Now, in her leadership role at the Genetic Alliance, Terry’s job is even more complex. The Genetic Alliance serves as a clearinghouse of information and resources for more than 600 member organizations, representing millions of people and families affected by genetic conditions. It provides the leaders in those organizations everything from low-cost shared office space to advice on starting or growing their teams. As critical stakeholders in legislation related to genetic privacy, genetic discrimination, and laboratory standards, the coalition has provided testimony and commentary to many key government offices.

This year marks the 20th anniversary of this dynamic organization. With a clear vision and strong leadership, it is safe to say that they will be around for many more.

Check out the Genetic Alliance website for more information.

Nicole Teed, M.S., C.G.C.

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