Sharon Terry Elected Fellow of Ashoka Foundation

PXE International Executive Director Elected a Fellow of the Ashoka Foundation
March 19, 2010
Contact: Molly Brenner 202-966-5557 x201

WASHINGTON, DC – Sharon Terry, executive director of PXE International and president and chief executive officer of Genetic Alliance, was just announced as an Ashoka Fellow, a distinguished lifelong position attained only after a rigorous selection process. Ashoka is the largest association of leading social entrepreneurs in the world that strives to enable the world´s citizens to think and act as changemakers.

Terry was selected as an Ashoka Fellow for her efforts in leading an organization that helps improve health outcomes for patients who have genetic diseases by aligning incentives and structures so that they facilitate, rather than obstruct, the continuum of research, drug development, treatment, advocacy, and support.

“Being named as an Ashoka Fellow is both humbling and empowering. It calls me to live entrepreneurship very personally, and thereby align and focus my energy on deep personal and organizational transformation,” stated Terry. “I am thrilled to collaborate with some of the best minds in the world to address serious global health issues. I will approach this task with the same dedication I have put into advancing the understanding of genetic disease over the past 15 years. The teams at both Genetic Alliance and PXE International are phenomenal collaborators; they, and my family, are what have catapulted me to this high honor. Lest any of them think I will be abandoning them for something different, the answer is a resounding NO! The change before us is to take the very tasks we are given and find new methods for solving old problems.  With the resources of the Ahsoka Network, I have no doubt that we will succeed at crafting the most difficult solutions.”

Ashoka Fellows are leading social entrepreneurs with innovative solutions to social problems. Working in over 60 countries around the globe in every area of human need, Ashoka Fellows demonstrate an unrivaled commitment to bold new ideas through a combination of compassion, creativity and collaboration. Ashoka thought that Sharon stood out because of novel entrepreneurial solutions she has created, such as the PXE International Blood and Tissue Bank, the first of its kind repository for both biological samples and clinical records.  Expanding this platform, she has created the Genetic Alliance BioBank and Repository, allowing any disease to create the same valuable asset using a common infrastructure.  This is only one example of her many achievements.

Ashoka Fellows working in the health field focus on areas such as securing much needed medicines, developing mechanisms for knowledge transfer, building robust public health systems and delivering a holistic approach to health. All Fellows must undergo a rigorous search and selection process in which they demonstrate that they fully meet Ashoka´s selection criteria.

“Sharon demonstrates a profound combination of entrepreneurial vision and managerial execution in how she leads,” said Gene Early, member of the Genetic Alliance Council. “With her vision, she has inspired PXE International and Genetic Alliance to consistently innovate for the benefit of those who have experienced the effects of a rare disease afflicting a loved one. With her management and leadership skills she has enabled her staff and those in her networks to take on increasingly transformative challenges and to succeed at changing the landscape of healthcare, especially in the area of human genetics. We who work closely with her are convinced that as an Ashoka fellow, she will further extend these contributions to a world in need of positive change.”

For more information, please visit

You can share Sharon´s Ashoka journey by following her on Twitter at @sharonfterry.

About Genetic Alliance

Genetic Alliance transforms health through genetics, promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance brings together diverse stakeholders that create novel partnerships in advocacy; integrates individual, family, and community perspectives to improve health systems; and revolutionizes access to information to enable translation of research into services and individualized decision making. For more information about Genetic Alliance, visit


About Ashoka

Founded in 1980, Ashoka is the world´s working community of more than 2,000 leading social entrepreneurs. It champions the most important new social change ideas and supports the entrepreneurs behind them by helping them get started, grow, succeed, and collaborate. As Ashoka expands its capacity to integrate and connect social and business entrepreneurs around the world, it builds an entrepreneurial infrastructure comprised of a series of global initiatives that support the fast-growing needs of the citizen sector. Ashoka´s vision is to create change today, for an Everyone A Changemaker™ society to become the reality of tomorrow. For more information, visit