Advocate

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Work Group Information

The Advocate Work Group is composed of advocate members of the Heartland Regional Genetics and Newborn Screening Collaborative from our eight member states. Core members include one advocate representative from each state. Advocates are family members, parents or individuals affected or impacted by genetic disorders. The Advocate Work Group meets regularly, but also is committed to having advocate representation on all other Heartland work groups. Current advocate representation as core members on workgroups and the Advisory Board includes:

Clinical Services: Jeanne Egger
Education: Holly Johnson, Julie Briggs
Newborn Screening: Mark Smith, Tara Lorg
Advisory Board : Larry Weatherford, Holly Johnson (Tara Lorg back up)

The work group membership currently includes a representative from all of our eight states; we always welcome additional members.

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Projects

Currently, the work group is focusing on identifying parent or family support groups in our region in conjunction with the Education Work Group. Other projects include giving input into the re-design of this web site, as well as exploring piloting and OK Financial resource guide with in our region.

In addition, an in person meeting was planned and held in the Spring of 2008.

March, 2008 Kansas City Advocate Meeting

Agenda
Evaluation Summary
Reviewing Proposals Presentation

Handouts:

Review of Purpose
Short Report card Project Narrative
Upcoming Heartland Projects

Pilot Project Application Review
The committee worked in conjunction with the Research committee to have one member act as a reader for each of the applications received for the third round of pilot projects. Carol Cross coordinated this effort. Fourth round projects were reviewed at the March 2008 meeting, and an advocate specific process for future reviews was developed, including incorporation of outcomes and values the group values into the evaluation criteria.

Education and Training
The committee explored different avenues for training and education to enhance their effectiveness, as well as more developing clearly defined roles for their group within the collaborative. The on-line course "Partners in Policy Making" was chosen as one tool; in addition training was organized and held at the 2007 Annual heartland Conference in Oklahoma City. The committee was renamed a "work group" at that time. A presentation and work session on reviewing proposals, focusing on Heartland pilot projects, was held at the March 08 meeting.

Newborn Screening Video Review
At the end of 2006, the Advocate Committee reviewed two videos being considered for use in a Newborn Screening Education project for expectant parents. The two videos were: "Newborn Screening: Protecting Your Baby's Health", from the New Jersey Hospital Association Health Research and Educational Trust, and "A Parent’s Guide to Newborn Screening" from the March of Dimes. The committee also provided a letter of support for the Heartland funding renewal application.

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Minutes/Summaries

The links below are to PDF files, which require Adobe Reader to view.

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Members

Get to know our members - click on a member's "Bio" link to find out more about the member.

Click on the committee member's address to send an e-mail.
Send e-mail to entire committee.

Co-Chairs:

  • Jeanne Egger (NE)
  • Leisha Suckstorf (NE)

Core Members:

Other Members:

Facilitator:

Shona Whitehead, Heartland Staff (OK)

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Meeting Dates

Meeting Dates: Second Sunday of the month at 9:00 pm.
Problems with call in-contact: ATT TeleConference Services at (800)526-2655

  • 01-10-10: Sun. 9-10 pm Conference Call
  • 11-15-09: Sun. 9-10 pm Conference Call
  • 10-11-09: Sun. 9-10 pm Conference Call
  • 9-18-09: Annual Meeting
  • 8-12-09: Wed. 7-8 pm Conference Call
  • 6-10-09: Wed. 4:30-5:30 pm Conference Call Agenda
  • 5-20-09: Wed. 7-8 pm Conference Call Cancelled
  • 4-8-09: Wed. 4:30-5:30 pm Conference Call Agenda
  • 3-11-09: Wed., 7-8 pm Conference Call Agenda
  • 2-11-09: Wed., 4:30-5:30 pm Conference Call Agenda
  • 1-14-09: Wed., 7-8 pm Conference Call Agenda
  • 12-10-08: Wed., 4:00-5:00 pm Confernece call Agenda
  • 11-12-08: Wed., 7-8 pm Conference call cancelled
  • 10-8-08: Wed., 4:30-5:30 pm Conference call   Agenda

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Last updated: 04/23/10 SRW