“EXPANDING OUR HORIZONS” PLENARY SESSION LOUISVILLE, 2007 EARL Y. CHENG, MD, FAAP Associate Professor of Urology Children’s Memorial Hospital The Feinberg School of Medicine at Northwestern University

CHICAGO WHITE SOX

WHAT IS ON THE HORIZON?

SBA Partnerships

SBA Mission Accomplished Education Print – Audio – Conference Internet Programs National - Local Research Support of Young Investigators Secure government funding

SBA Mission Accomplished Advocacy Partnership with CDC AHRQ NIH NIDDK NINDS Evidence Based Practice in Spina Bifida Scientific credibility of previous studies Defined areas of need for future research

Capitol Hill Prominent credible presence Continuous educational effort Spina Bifida Caucus ~ $5 million appropriated 2007 National Spina Bifida Program CDC-National Center on Birth Defects and Developmental Disabilities

EXPERTS MEETING February 24, 2006 SBA PACCDCAHRQ Review of Spina Bifida Clinic Survey Fall ‘05 Evaluation of what is needed to enhance current standard of care Status of clinics – lack of uniformity Lack of adult care clinics Lack of dedicated and organized research agenda

EXPERTS MEETING February 24, 2006 SBA PACCDCAHRQ FUTURE AGENDA National Spina Bifida Patient Database Registry Spina Bifida Clinical Care Network Multidisciplinary Professional Conference 2009 every 3 years

PLENARY SESSION “Challenges in Spina Bifida Care in the Next 20 Years”

FUTURE AGENDA National Spina Bifida Patient Database Registry Spina Bifida Clinical Care Network Multidisciplinary professional conference

Panel Thomas Webb, MD Assistant Professor of Internal Medicine / Pediatrics University of Cincinnati Timothy Brei, MD Clinical Associate Professor of Pediatrics Indiana University Shubhra Mukherjee, MD Assistant Professor of Physical Medicine and Rehabilitation Jeffrey Blount, MD Associate Professor of Neurosurgery University of Alabama Birmingham

OUTLINE CLINIC SURVEY Thomas Webb, MD SPINA BIFIDA CLINICAL CARE NETWORK Timothy Brei, MD TRANSITION Shubhra Mukherjee, MD THE FUTURE Jeffrey Blount, MD

Question and Answer Session 3 x 5 cards available for questions