2007 Collaborative Meeting

Heartland Regional Genetics and Newborn Screening Collaborative Annual Conference

September 6-7, 2007

The 4th annual Heartland Regional Genetics and Newborn Screening Collaborative conference was held September 6-7, 2007 in Oklahoma City at the historic Hilton Skirvin in the heart of downtown Oklahoma City. Over 100 people from 15 states attended. Thank you to all who attended and participated!

Quick Links

Conference Information

  • Agenda The agenda focused on updates on current projects and planning for the next two years.
  • Evaluations: 41 evaluations were recieved and compiled. Most responses and comments were favorable. See the Evaluation Summary for more detail.

General Schedule:

  • Wed. September 5: Arrival and ancillary meeting: Lay Advocate Training 3-9 pm
  • Thurs. September 6: Meeting from 8:15 am - 5:30 pm.
    Evening dinner event at the Oklahoma City Museum of Art
  • Fri. September 7: Meeting from 8:15 - 3 pm

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Speaker Slide Sets

Please contact us if you would like any of these in Power Point format.

Wed. September 5
Lay Advocate Training
Jan Moss, Lay Advocate Training Session
All About Your Preferences Handout
Boards and Committees

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Thursday, September 6
Plenary Session
Health Resources Services Administration, Maternal Child Health Bureau Genetic Services Branch
Regional Genetic and Newborn Screening Service Collaboratives Jill Shuger

Report of the National Coordinating Center: Providing Resources for Bringing Genetics and NBS Services to Local Communities
Michael Watson

Annual Report of the Regional Coordinating Center and Heartland Collaborative Lori Williamson Dean

Legislative Update James O'Leary

LEND (Leadership Education in Neurodevelopmental Disabilities)
Introduction to LEND in our region Linda Wilson
LEND and Genetics: a natural fit Brad Schaefer

Long-term follow-up after NBS: the Inborn Errors of Metabolism Information System Sue Berry

The Future of Newborn Screening: An Update from the
Advisory Committee on Heritable Disorders and Genetic Diseases in
Newborns and Children Amy Brower

How genetics can strengthen the medical home Gina DiRenzo-Coffey

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Education Workgroup Presentations
Town Hall Meetings: Expanded Newborn Screening: If We Offer It, Will They Come? (Pilot Project) Gene Hallford

New Iowa HRSA project, Kim Piper,: No slides

Family history campaign—next steps, James O'Leary: No slides

Teratogen Resource Project
Heartland Multi-State Teratogen Education Project (Pilot Project)
Brad Schaefer

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Newborn Screening Workgroup Presentations
Laboratory workshop: expansion/harmonization and Disaster preparedness project
Heartland Small Project Update: Reduce Disparity of NBS Laboratory Services in the Heartland Region (Pilot Project)

The Heartland NBS Backup Testing and Quality Assurance Project
both by Stan Berberich

New Iowa HRSA project, Kim Piper,: No slides

Maple Syrup Urine Disease in Mennonites (Pilot Project) Charlotte Phillips

Genome Disorders Susan Hassed

Cystic fibrosis mutations in American Indian populations Shibo Li

Kansas-Nebraska telemedicine project (Pilot Project) Brad Schaefer

Genetic Alliance Newborn Screening Grants, James O'Leary: No Slides

Save the Babies Foundation Ryan McLaughlin, Mrs. Oklahoma: No Slides

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Friday, September 7
Plenary Session
Public Health Genomics Scholarship Report Jamie Kim

State Reports:

Genetics Report Card Project John Mulvihill and Ann Chou

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Clinical Services Workgroup
Neurofibromatosis parental stress project (Pilot Project) Larry Mullins

Transition model in sickle cell disease Delphine Dorsey

Genome Disorders Susan Hassed

Kansas-Nebraska telemedicine project (Pilot Project) Brad Schaefer

2007 Literature Review

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An Evening at the Oklahoma City Museum of Art

Chihuly glass artEveryone enjoyed a relaxing evening at the Oklahoma City Museum of Art. Attendees toured the breath taking permanent exhibition of Dale Chihuly glass art, as well as the other exhibits, enjoyed a reception with light refreshments and a cash bar, and dinner in the Museum Cafe.

Sponsored by Children's Medical Research Institute.

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Oklahoma City Information

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