Sharon F. Terry

Sharon F. Terry (born November 16, 1956 in Waterbury, Connecticut) is a health advocate in Washington, D.C. She co-founded PXE International when her children were diagnosed with pseudoxanthoma elasticum (PXE) in 1994.[1] Her TEDMED talk[2] has been viewed more than a million times in 2017, and was the subject of the TED Radio Hour.[3] In 2009, she was elected an Ashoka Fellow[4] for her entrepreneurial work in engagement and the development of interventions for genetic conditions.

Sharon F. Terry
Born (1956-11-16) November 16, 1956
EducationState University of New York at Stony Brook, Assumption College
Occupationhealth care advocate

Professional background

She is the current President and CEO of Genetic Alliance,[5] and Executive Director of PXE International,[6] a research organization for the genetic disorder pseudoxanthoma elasticum (PXE).

She is co-founder of the Genetic Alliance Registry and Biobank.[7] She is the chair of the Coalition for Genetic Fairness that advocated for the passage of the Genetic Information Nondiscrimination Act.[8]

She also serves on the Advisory Panel for the Precision Medicine Initiative,[9] boards of the National Academy of Medicine Board on Health Sciences Policy [10] and many other health and research related organizations.

In 2005, Terry received an honorary doctorate from Iona College for her work in community engagement and haplotype mapping, and in 2007 received the first Patient Service Award from the UNC Institute for Pharmacogenomics and Individualized Therapy.[11] She also accepted the Paul G. Rogers Distinguished Advocacy Organization Award from Research!America in 2009.[12] In 2012, she received the Spirit of Empowerment Advocacy Award, Facing Our Risk of Cancer Empowered,[13] and was given an Honorary Professorship, at Hebei United University, Tangshan, China. In 2013, she was named one of the Food and Drug Administration's Rare Disease Heroes.[14] In 2016 she was named a National Association of the National Research Council,[15] and received the Health 2.0 Activist Award.[16] In 2019, she received the Luminary Award from the Precision Medicine World Conference.[17]

She also serves as the President of Schola Ministries, a nonprofit dedicated to producing the music of Kathleen Deignan.[18]

Her work includes novel data-sharing projects such as Registries for All,[19] winner of the Transforming Health Systems Ashoka Changemakers Award.[20][21] She served on the Institute of Medicine Committee on the Necessity of Use of Chimpanzees in Biomedical and Behavioral Research[22] and the IOM Committee on a Review of the California Institute for Regenerative Medicine.[23] She is the co-chair of the National Academy of Medicine's Roundtable on Genomics and Precision Medicine.[24]

References
  1. Kolata, Gina (2000-05-23). "A Family's Goal Is Met And a Gene Is Found". The New York Times. ISSN 0362-4331. Retrieved 2019-08-14.
  2. Terry, Sharon, Science didn't understand my kids' rare disease until I decided to study it, retrieved 2019-08-14
  3. "Sharon Terry: When Siblings Get A Rare Diagnosis, Can Their Parents Find the Cure?". NPR.org. Retrieved 2019-08-14.
  4. http://usa.ashoka.org/fellow/sharon-terry
  5. "Sharon Terry". Genetic Alliance. Retrieved 2011-03-05.
  6. http://www.pxe.org
  7. www.bloomberg.com https://www.bloomberg.com/news/articles/2013-03-21/innovator-sharon-terrys-global-database-for-disease-research. Retrieved 2019-08-14. Missing or empty |title= (help)
  8. "All About the Genetic Information Non-Discrimination Act of 2008 (GINA)". Genome.gov. Retrieved 2011-03-05.
  9. https://www.nih.gov/precision-medicine-initiative-cohort-program/sharon-terry-ma
  10. "Archived copy". Archived from the original on 2010-01-14. Retrieved 2013-08-08.CS1 maint: archived copy as title (link)
  11. "IPIT Good". Ipit.unc.edu. Archived from the original on 2011-07-20. Retrieved 2011-03-05.
  12. http://www.researchamerica.org/release_09mar24_rogers
  13. "FORCE Conference: Annual Awards". www.facingourrisk.org. Retrieved 2019-08-14.
  14. https://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/OOPDNewsArchive/ucm341676.htm#terry
  15. https://www.nationalacademies.org/memarea/associates/index.html#T
  16. https://www.prnewswire.com/news-releases/health-20-unveils-top-10-finalists-from-global-retrospective-awards-300332134.html
  17. http://www.bioquicknews.com/node/4877
  18. "About". Schola Ministries. Retrieved 2011-03-05.
  19. www.bloomberg.com https://www.bloomberg.com/news/articles/2013-03-21/innovator-sharon-terrys-global-database-for-disease-research. Retrieved 2019-08-14. Missing or empty |title= (help)
  20. http://www.changemakers.com/healthbiz/entries/reg4all
  21. https://www.reg4all.org
  22. Fischman, Josh (2011-12-15). "Chimp Research Is Sharply Curbed After Critical Report to NIH". The Chronicle of Higher Education. ISSN 0009-5982. Retrieved 2019-08-14.
  23. "Archived copy". Archived from the original on 2011-08-15. Retrieved 2012-01-25.CS1 maint: archived copy as title (link)
  24. https://www.nationalacademies.org/hmd/Activities/Research/GenomicBasedResearch.aspx
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