The Future is Here Now

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The Future is Here Now

• Cindy Brownstein
• Chief Executive Officer

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Mission

• Promote the prevention of Spina Bifida and to
  enhance the lives of all affected

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SBA Network

• 46 Chapters serving over 125 communities across
  the US
• 165 Spina Bifida Clinics treating and caring for
  children and adults
• National Resource Center reaches 10,000 each year

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Spina Bifida Stats

• Spina Bifida affects
• more than 70,000 individuals
• approximately 3,000 pregnancies each year
• all women of child-bearing age are at-risk of a
  Spina Bifida pregnancy

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SBAs Tools

• Education
• Advocacy
• Research
• Service

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Education

• Spina Bifida Awareness Campaign
• Field Services Program
• Folic Acid Education and Awareness Program
• Media Outreach Efforts

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Advocacy

• National Spina Bifida Program at the National
  Center on Birth Defects and Developmental
  Disabilities within the Centers for Disease
  Control and Prevention (CDC)
• Agency for Healthcare Research and Quality (AHRQ)
• Medicaid and the State Childrens Health
  Insurance Program

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Research

• Research Program
• Young Investigators
• Evidence-Based Care/Quality Improvement Among
  Spina Bifida Clinics
• National Spina Bifida Patient Registry

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Service

• Field Services Program
• Innovative Grant Program
• Leadership Institute
• Adopt-A-Ghost

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Working with Partners

• Interdisciplinary centers such as the UCEDDs and
  LENDs helpful to achieving SBAs goals
• Education programs need to follow current trends
• Advocacy efforts need data
• Research grants program growth
• Service efforts need partners

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Spina Bifida AssociationThe Future is Here Now

• Reach top 50 markets in US
• Nationwide organization serving every community
• Everyone touched by Spina Bifida is touched by
  SBA

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For more information

• Website
• www.spinabifidaassociation.org
• National Resource Center
• 1-800-621-3141