The Future is Here Now

Cindy Brownstein

Chief Executive Officer

Mission

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

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

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

SBA’s Tools

• Education

• Advocacy

• Research

• Service

Education

• Spina Bifida Awareness Campaign

• Field Services Program

• Folic Acid Education and Awareness Program

• Media Outreach Efforts

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

Research

• Research Program – Young Investigators

• Evidence-Based Care/Quality Improvement Among Spina Bifida Clinics

• National Spina Bifida Patient Registry

Service

• Field Services Program

– Innovative Grant Program

– Leadership Institute

– Adopt-A-Ghost

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

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

For more information

• Website:

www.spinabifidaassociation.org

• National Resource Center:1-800-621-3141