Spina Bifida Association of New York State

Spina Bifida Association of Northeastern New York (SBANENY) is a 501(c)(3) nonprofit organization serving individuals and families living with Spina Bifida, which is a birth defect that occurs in the first month of pregnancy when the spinal column does not close or form properly. Those born with Spina Bifida can live with mobility challenges, bladder, bowel, and gastrointestinal disorders, hydrocephalus, anxiety, depression, executive dysfunction, learning disabilities, obesity, and latex allergy. Ultimately, Spina Bifida can affect a person’s ability to walk, learn, socialize, work, and live independently. We envision a world where 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.

SBANENY was founded by parents of children living with Spina Bifida in 1993 to support individuals and families in addressing medical and psychosocial needs. SBANENY employs 1 full time staff, multiple interns, and 100+ volunteers officially serving Northeastern New York. As the only affiliate chapter of the National Spina Bifida Association in New York State, we respond to requests for information and support and invite consumers to programming statewide. SBANENY provides information and education, referrals, support, advocacy, systems navigation, and programming for individuals and families living with Spina Bifida.