• Skip to primary navigation
  • Skip to main content
  • Skip to footer

Stone Soup Group

Supporting Alaskan Families who care for children with special needs.

  • About
    • History & Mission
    • Our Team
    • Our Accountability
    • Our Partners
    • News & Updates
  • Contact
  • Careers
  • Press
  • Facebook
  • Twitter
  • YouTube
  • Newsletter Signup
  • Search
Donate
  • Start Here
    • Choose the Right Path for Your Family
    • For Parents & Families
    • For Professionals
    • Programs & Services
    • Contact Us
  • Connect
    • Parent Navigation
    • Developmental Disabilities Resource Connection (DDRC)
    • MAP Parent Mentor Program
    • Specialty Clinics
    • Family Stories
  • Training & Events
    • Training and Event Registration
    • Community Calendar
    • 2023 Stone Soup Group Parent Conference
    • Parent Conference Archive
    • Training and Event Recordings Archive
  • Get Involved
    • Join the Board
    • Become a Mentor Parent
    • Speak Out
    • Invest in Families
    • Volunteer
  • Resources
    • Resources for Families in Response to COVID-19
    • Find a Provider
    • Family Resource Guide
    • Resources, Forms, Tip Sheets and Templates
    • Publications
    • Translated Videos and Materials
    • Financial Supports
    • FAQ
  • About
    • History & Mission
    • Our Team
    • Our Accountability
    • Our Partners
    • Careers
    • News & Updates
  • Contact
  • Careers
  • Press

Our very own Greta Goto featured in National Institute of Health (NIH) article

September 21, 2019 By Eric Jordan Leave a Comment

Visit page with the original article here.

The NHGRI Community Engagement in Genomics Working Group aims to engage communities to ensure that genomics and genomic medicine benefit all.

Overview

Community Engagement Working Group
From left to right: Gwen Darien, Carla Easter, Kellan Baker, Suzanne Held, Maya Sabatello, Alma McCormick, Christina Daulton, Ella Greene-Moton, Alicia Santiago, Greta Goto.

The NHGRI Community Engagement in Genomics Working Group (CEGWG) was established in 2017 as a working group of the National Advisory Council for Human Genome Research. The goals of the working group are to facilitate NHGRI’s understanding of community perspectives and needs about genomics, engage and educate diverse communities about genomics, inform the leadership of NHGRI of issues relevant to its portfolio of genomics research and related programs.

The working group is comprised of community liaisons and health advocates representing diverse populations, works to accomplish its mission and goals by:

  • Assessing the gaps and needs of diverse communities related to genomics and genomic medicine.
  • Developing programs and disseminating tools and resources to address identified gaps and needs.
  • Providing input about the activities of the Division of Policy, Communications, and Education, particularly about their ability to reach all communities and to increase genomic literacy.
  • Working in partnership with NHGRI to build relationships and trust with communities and to increase understanding of diverse communal views and priorities relevant to genomics.
  • Identifying potential areas of synergy or collaboration among communities, NHGRI, other National Institutes of Health Institutes/Centers, and national and international organizations

Members

Chair:
  • Gwen Darien
    Executive Vice President for Patient Advocacy and Engagement
    National Patient Advocate Foundation
Members:
  • Kellan Baker
    Centennial Scholar, Department of Health Policy and Management
    Johns Hopkins School of Public Health
  • Jermane Bond, Ph.D.
    Senior Director, Quality Measurement
    National Quality Forum
  • Greta Goto
    Life-long Alaskan
    Founding Member, Prader-Willi Syndrome Alaska Parent Group
    Special Projects Manager, Stone Soup Group*
  • Suzanne Held, Ph.D.
    Professor of Community Health
    Montana State University, Bozeman
  • Rev. Leland Jones, D.Min.
    Pastor, Greater New Light Missionary Baptist Church
  • Alma McCormick
    Executive Director, Messengers for Health
    Crow Nation
  • Ella Greene-Moton
    Community Education Coordinator
    Center for Public Health and Community Genomics
    University of Michigan, School of Public Health, Ann Arbor
  • Kate Reed
    Director, Clinical and Continuing Education Program
    The Jackson Laboratory
  • Mary Jackson Scroggins
    Founding Partner, Pinkie Hugs, LLC
    Co- Founder, In My Sister’s Care
  • Maya Sabatello, L.L.B., Ph.D.
    Assistant Professor of Clinical Bioethics
    Department of Psychiatry
    Co-Director, Precision Medicine: Ethics, Politics and Culture Project
    Institute for the Study of Human Rights
    Columbia University
  • Alicia Santiago, Ph.D.
    Science Advisor and Diversity Consultant
    Twin Cities PBS

* An Alaska statewide non-profit that helps support families who care for children with special needs.

NHGRI Representatives:
  • Carla Easter, Ph.D.
    Chief, Education and Community Involvement Branch, Division of Policy, Communications, and Education
  • Christina Daulton, M.A.
    Education Outreach Specialist, Education and Community Involvement Branch, Division of Policy, Communications, and Education

Filed Under: Community, News

Reader Interactions

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Footer

Parents & FamiliesParents & Families

Find assistance with school, health care or behavior related issues through Parent Navigation, or be connected with other families in similar situations.

Learn More

Training & EventsTraining & Events

If you are a parent, professional or youth with special needs, Stone Soup Group offers year-round activities and training to help you gain skills and connect with others in our community.

Learn More

CommunityCommunity

Let your voice be heard. Join various community opportunities and speak your mind about the issues facing children and youth with special needs and the families who care for them.

Learn More

Find a Provider

Find a Provider

Google will tell you who is in our community, but it can’t tell you whether other families would recommend them. We can help you find recommendations from other families, along with other details like what insurance plans are accepted.

Learn More

Stone Soup Group 307 E Northern Lights Blvd #100 Anchorage, AK 99503 · Directions and Map
Phone: (907) 561-3701 · Tax ID: 92-0149995
Board Login
Privacy Policy and Website Disclaimer



Top
Copyright © 2023 Stone Soup Group · All rights reserved. Website by Sundog Media, LLC Logo Sundog Media, LLC.