Spina Bifida of Western New York, Inc. is a registered 501 (c) 3 non-profit organization that was founded in 1973 to address the specific needs of people with spina bifida and/or hydrocephalus and their families in the Western New York area. 

Our mission is to enhance the lives of individuals and families affected by spina bifida in the eight-county Western New York community by providing education, information, social support, recreation and advocacy services and linkages to other relevant service providers. 

The organization also seeks to inform the larger community about spina bifida, hydrocephalus, and related neural tube defects and to promote preventive measures.  The organization accomplishes its purpose through a dedicated network of Board Members, family members, professionals and collaborating organizations.

The Spina Bifida organization is run by a board of directors, made up largely of parent volunteers, individuals with Spina Bifida and community members.  Together, we provide a variety of programs to benefit families in all 8 counties of Western New York: Erie, Niagara, Allegany, Cattaragus, Chautauqua, Orleans, Wyoming, and Genesee.

Please see the current list of our Board of Directors.