Sharon Terry

Sharon Terry is a remarkable advocate for patient rights and genetic research. She is the CEO of Genetic Alliance, a global network that supports individuals and families with genetic conditions. Her work is deeply personal, as two of her own children were diagnosed with pseudoxanthoma elasticum (PXE), a rare genetic disorder. This experience led her to co-found PXE International, a group dedicated to finding a cure and helping others with the condition. Without a science background, Sharon dove into the world of genetics. Her hard work and dedication led to the discovery of the gene that causes PXE. This success story made her a leader in the “citizen science” movement, where ordinary people can become active partners in scientific research. In addition to her research advocacy, Sharon is a powerful voice in public policy. She was a key leader in the fight for the Genetic Information Nondiscrimination Act (GINA), a law passed in 2008 that protects people from being discriminated against based on their genetic information. She has received numerous awards for her groundbreaking work, including being named a MacArthur Fellow, a prestigious honor often called the “genius grant.” Her efforts continue to empower patients and change the way biomedical research is conducted.