Our Vision: We envision a world in which no pregnancies are affected by Spina Bifida. People living with Spina Bifida thrive in a barrier-free world that offers ready access to an array of effective treatment options and uniformly excellent medical care. Their individual life choices are not impeded by Spina Bifida and all experience rich and personally fulfilling lives.
Our Cause: Spina Bifida is the most common permanently disabling condition that babies are born with in this country – almost 3,000 babies each year. Spina Bifida is a neural tube defect that occurs in the first month of pregnancy when the spinal column does not close completely. The effects of Spina Bifida are different for every person. Up to 90% of children with the most severe form of Spina Bifida have hydrocephalus (fluid on the brain), the majority of whom require a shunt. Other conditions include full or partial paralysis, diminished bladder and bowel control, learning difficulties, depression, latex allergies, and social and sexual challenges.
While the severity varies, these medical issues affect a person’s ability to walk, learn, go to school, work, and raise a family. Thanks to medical advancements, most people born with Spina Bifida can expect to live a normal life span.
The Need: There is no cure for Spina Bifida, but we know that the earlier individuals receive care, the better their quality of life will be. It is imperative that we reach families as soon as they know they are having a baby with Spina Bifida so that we can provide them with appropriate resources and support.
Parents, children with Spina Bifida, and siblings are all affected by the needs often required to care for the individual with Spina Bifida, placing extraordinary physical, emotional, social and financial stress on the family unit and individuals within.