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What is Spina Bifida. Spina Bifida is the numberone permanently disabling birth defect in the United States. Spina Bifida is a neural tube defect and occurs when the central nervous system brain and spinal cord does not properly form during the early stages of pregnancy within the first 28 days often before most women even know they are pregnant. There are approximately PROGRAMS SERVICES FireFly Camps Retreats Family School Partnership BluePrints Family Networking Group GatehouseProgram Adult CommunityServices Wellness Program EVENTS 8th Annual Shoot for SBAWP 12th Annual Afternoon JamFest Jergel039s Highmark Walk Heinz Field 37th Annual John L.