Meet Our Team
The iHope Program is led by a dedicated team of professionals committed to expanding equitable access to genomic testing for children and families worldwide.
Sharon Terry
President and Chief Executive Officer
Sharon F. Terry is President and CEO of Genetic Alliance, where she leads a global coalition of disease advocacy organizations dedicated to transforming health through patient engagement, data stewardship, and collaborative research. Since the mid-1990s, she has been a key figure in promoting patient-driven approaches that place individuals, families, and communities as active partners in science, care, and policy. Under her leadership, Genetic Alliance has developed models that empower individuals to control their own health and genomic data, speed up the translation of research into services, and support informed, personalized decision-making. She led the national coalition that successfully passed the Genetic Information Nondiscrimination Act (GINA), establishing vital protections for individuals and families. Sharon is also a co-founder of PXE International, established after two of her children were diagnosed in 1994 with pseudoxanthoma elasticum (PXE). PXE International is widely recognized for demonstrating how families can drive discovery. Her scientific contributions include co-discovering the ABCC6 gene, developing a diagnostic test, leading clinical trials, and creating the first lay-led registry, biobank, IRB, and research consortium in advocacy history. She is the author of more than 200 peer-reviewed publications, including over 50 focused on PXE, and her story has been featured in a TED Talk and the TED Radio Hour. Sharon has held influential leadership roles nationally and internationally, including Chair of the National Academies of Medicine Board on Health Sciences Policy and participation in the Accelerating Medicines Partnership. She is a co- founder of International Rare Disease Research Consortium, GA4GH, and serves as President of EspeRare. An Ashoka Fellow since 2009, Sharon has received numerous honors, including the American Society of Human Genetics Advocacy Award, FDA Hero, and Research!America’s Distinguished Organization Advocacy Award. She is also CFO of the Gestalt Practice Library and Resource Center and a long-time student and facilitator of Gestalt Awareness Practice. She is a mother and grandmother. Her daughter and son, their wives, and her granddaughter remain central to discovering what to do with her one precious life.
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Ryan J Taft, PhD
Chief Scientific Officer
Ryan leads the scientific strategy at Genetic Alliance, overseeing clinical genomics programs, patient registries, and translational research initiatives, including the iHope Program. He brings extensive experience across industry and nonprofit settings, with prior senior leadership roles at Illumina and Tempus, where he helped advance large-scale genomic testing, data platforms, and clinical implementation of precision medicine. At Genetic Alliance, Ryan focuses on building patient-centered, ethically grounded genomic programs that expand access to diagnosis, enable longitudinal learning, and translate genomic insights into meaningful clinical impact across diverse global settings.
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Erin Venti, MS, CGC
Director, Clinical Programs
Erin is a board-certified genetic counselor with experience spanning direct patient care, clinical research, clinical laboratory testing and management. For the past decade, Erin's work has focused on diagnostic testing and equitable testing access for patients with rare and undiagnosed genetic disease. Currently, Erin manages the day-to-day operations of the iHope program.
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Jennifer Troyer
Director, Global Genomics
Dr. Jennifer Troyer is the Director of Global Genomics at Genetic Alliance, leading global genomics strategy, strengthening partnerships across sectors and expanding initiatives that connect genomic research with patient communities. Jennifer brings more than a decade of leadership in genomics research administration and global health initiatives. She most recently served as Director of the Division of Extramural Operations at the National Human Genome Research Institute (NHGRI), where she led efforts to coordinate research funding, policies, and programs supporting genomic science worldwide. Throughout her career, Dr. Troyer has led and managed complex, international research initiatives. At NHGRI, she oversaw grant portfolios focused on comparative genomics and genome function, and played key roles in major global programs such as the Human Heredity and Health in Africa (H3Africa) initiative, which advances genomic research and infrastructure across the African continent.
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