Spina Bifida Association of Greater New England

The Spina Bifida Association of Greater New England ("SBAGNE") serves individuals and families living with Spina Bifida in all six New England states. The CDC estimates that there are 4,400 individuals and their families living with Spina Bifida in New England. SBAGNE is the only voluntary health organization in the New England area solely serving individuals living with Spina Bifida, their families, caregivers, and clinical professionals. We provide education, resources, and support to individuals as they move toward healthy, fulfilling, and independent lives. Our programs include: health and wellness programs; educational and social activities; a regional conference; teen empowerment; parent-to-parent connections; financial benefit awards; outreach; advocacy; and team building.

Spina Bifida is the most common permanently disabling birth defect. It occurs when the spine and spinal cord do not form properly within the first 30 days of a pregnancy and impacts approximately 1,650 births each year. Individuals with Spina Bifida have multiple medical needs including: walking and mobility issues from paralysis; bowel and bladder problems; water on the brain (hydrocephalus); latex allergies and pressure sores. There is no cure. Treatments may ameliorate symptoms, but any paralysis will be lifelong. Thanks to medical advances, today nearly 85 percent of children with Spina Bifida live into adulthood.