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The Future is Here Now Cindy Brownstein Chief Executive Officer.

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Presentation on theme: "The Future is Here Now Cindy Brownstein Chief Executive Officer."— Presentation transcript:

1 The Future is Here Now Cindy Brownstein Chief Executive Officer

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

3 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

4 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

5 SBA’s Tools Education Advocacy Research Service

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

7 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 Children’s Health Insurance Program

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

9 Service Field Services Program –Innovative Grant Program –Leadership Institute –Adopt-A-Ghost

10 Working with Partners Interdisciplinary centers such as the UCEDDs and LENDs helpful to achieving SBA’s goals –Education programs need to follow current trends –Advocacy efforts need data –Research grants program growth –Service efforts need partners

11 Spina Bifida Association: The Future is Here Now Reach top 50 markets in US Nationwide organization serving every community Everyone touched by Spina Bifida is touched by SBA

12 For more information Website: www.spinabifidaassociation.org National Resource Center: 1-800-621-3141


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