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Spina Bifida Association: Enhancing Lives, Empowering Futures

The Spina Bifida Association promotes prevention, educates and advocates for affected individuals, and conducts essential research. With 46 chapters and 165 clinics nationwide, SBA is a leading resource for over 70,000 individuals with Spina Bifida. Join us in making a difference!

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Spina Bifida Association: Enhancing Lives, Empowering Futures

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  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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