Sharon Terry

Sharon Terry

Vista, California, United States
8K followers 500+ connections

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Tribal Ground Circle

  • Contact Sharon for services

    Life Coaching, Healthcare Consulting, Leadership Development, Non-profit Consulting, and Writing

About

For over 20 years, I have been leading Genetic Alliance, a network of more than 1,200…

Articles by Sharon

Activity

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Experience

  • Genetic Alliance Graphic

    Genetic Alliance

    Washington D.C. Metro Area

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    Aptos, CA

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    Geneva Area, Switzerland

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    Greater San Diego Area

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    Lakeville, Connecticut, United States

Education

  • Tribal Ground Circle

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    This is a two year study program. Christine Price writes: “Gestalt Awareness Practice (GAP) is best viewed as a sport and an art, as well as a form of spiritual practice. Developing a greater capacity to be present in our lives is the motivation, and working with whatever arises is the means for that development. Therefore, the process is aimed at inquiry and discovery rather than problem solving.

    “The emphasis is primarily intra-personal, centering on the student’s relationship to his…

    This is a two year study program. Christine Price writes: “Gestalt Awareness Practice (GAP) is best viewed as a sport and an art, as well as a form of spiritual practice. Developing a greater capacity to be present in our lives is the motivation, and working with whatever arises is the means for that development. Therefore, the process is aimed at inquiry and discovery rather than problem solving.

    “The emphasis is primarily intra-personal, centering on the student’s relationship to his or her own experience. Attention to breathing and physical sensation is a key component of the practice.

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    Did all of the course work for a doctorate in counseling psychology, but Elizabeth came along, and she was far more interesting!

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    Activities and Societies: I was a curator for the Earth and Space Sciences Museum, and was a staff person in the same department's library.

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    Activities and Societies: I took everyone religion course I could, and no science classes - little did I know how important they would be later!

  • - Present

Licenses & Certifications

Volunteer Experience

Publications

  • Life as a Numerator

    Applied Translational Genomics

    My less politically correct narrative about living with disease as a catalyst to change.

    See publication

  • An end to the myth: there is no drug development pipeline.

    Translational Science

    Navigating the Ecosystem of Translational Science: it's a network, not a pipeline.

    Other authors
    • Baxter K Horn E Gal-Edd N Zonno K O'Leary J Terry PF

  • The Haystack is Made of Needles

    Genetic Testing and Molecular Biomarkers

    It is often said that finding enough of the right people for a clinical trial is like finding a needle in a haystack. Not so - the haystack is made of needles!

    Other authors
    • Dixie Baker Greg Biggers Robert Shelton Kelly Edwards
    See publication

  • From basepairs to bedside...and beyond

    Genetic Testing and Molecular Biomarkers

    Other authors

  • The Experts Speak: What are the Biggest Challenges and Opportunities for Biorepositories in the next three to five years

    Biopreservation and Biobanking/Liebert Publications

    Abbreviated excerpt: For biobanks, in the near and long term the biggest challenges and opportunities are in many ways one and the same. Both involve the field’s ability not only to continue to dramatically advance, but to harness its full potential via innovation to ensure actualization of impact. Towards this pathway a few key things will be incredibly important in fostering success: voluntary adaptation related to necessary cultural changes to further cement and centralize appropriate…

    Abbreviated excerpt: For biobanks, in the near and long term the biggest challenges and opportunities are in many ways one and the same. Both involve the field’s ability not only to continue to dramatically advance, but to harness its full potential via innovation to ensure actualization of impact. Towards this pathway a few key things will be incredibly important in fostering success: voluntary adaptation related to necessary cultural changes to further cement and centralize appropriate infrastructure either in instituting center of excellence/biological resource center, core facility and/or integrated biobank network models (in conjunction with tools to aide inter-operability, formal induction and evolution towards best in tandem with integration of evidence based practice preparation) as well as incorporation of biobusiness activities (i.e., cost recovery implementation and fit for purpose resource organization and resource evaluation). The ability for biobanks to embrace the changing perspective of viewing the biospecimen as a potential work product and provide focus on the life cycle, related process chain, and related pipeline planning will be hugely beneficial......

    See publication

Patents

  • Methods for diagnosing Pseudoxanthoma elasticum

    Issued US 6,780,587

    Methods and compositions are provided for diagnosing and treating Pseudoxanthoma elasticum (PXE) patients and PXE carriers. Methods and compositions are based on the discovery that PXE mutations are located in the MRP6 (ABCC6) gene.

    See patent

Projects

  • Free The Data - Genes should be free and not patented.

    Free The Data painting created by street artist Aaron De La Cruz as well as 11 BRCA positive patients.

    Free The Data is a movement to empower BRCA positive individuals to share their variants with the medical and scientific community to advance our understanding of Cancer.

    www.free-the-data.org

    Other creators
    See project

  • Platform for Engaging Everyone Responsibly (PEER)

    Customize this for data collection for your project, community, disease, or campaign. Individuals trust this because it is set in your trust framework, and they set their own sharing, privacy, and data access preferences.

    Other creators
    See project

  • Registries for All

    - Present

    Gamified experience to enable individuals to share health information and set their own data sharing, privacy and access preferences. Built on the Platform for Engaging Everyone Responsibly. Core to our PCORI PPRN contract.

    Other creators
    See project

  • Schola Ministries

    - Present

    Creative platform for the artistic and contemplative creativity of Kathleen Deignan, CND.

    Other creators
    See project

Honors & Awards

  • Luminary Award

    Personalized Medicine World Congress

  • 30 Heroes for the 30th Anniversary of the FDA Orphan Drug Act

    FDA

  • Collaborate|Activate Innovation Challenge Award

    Sanofi

    Registries for All Diseases has been selected as the winner of the Collaborate|Activate Innovation Challenge. Registries for All Diseases is an initiative to create a comprehensive, crowdsourced, cross-disease registry to help accelerate translational research for over 1,000 diseases. The team, consisting of partnering organizations Genetic Alliance, CFIDS Association of America, National Psoriasis Foundation, and the Inflammatory Breast Cancer Research Foundation, will receive $300,000 to…

    Registries for All Diseases has been selected as the winner of the Collaborate|Activate Innovation Challenge. Registries for All Diseases is an initiative to create a comprehensive, crowdsourced, cross-disease registry to help accelerate translational research for over 1,000 diseases. The team, consisting of partnering organizations Genetic Alliance, CFIDS Association of America, National Psoriasis Foundation, and the Inflammatory Breast Cancer Research Foundation, will receive $300,000 to bring their vision to life.

  • Honorary Professorship

    Hebei University, Tangshan, China

  • Spirit of Empowerment Advocacy Award

    Facing Our Risk of Cancer Empowered

  • Fellow

    Ashoka

  • Distinguished Organization Advocacy Award

    Research!America

  • Patient Service Award

    UNC Institute for Pharmacogenomics and Individualized Therapy

  • Honorary Doctorate

    Iona College

Languages

  • French Canadian

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Organizations

  • National Academies Board on Health Science Policy

    Board Member

    - Present

  • National Coalition for Health Professional Education in Genetics

    Board Member

    - Present

  • National Academy of Medicine Roundtable on Genomics and Precision Health

    Co-Chair

    - Present

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