Spina Bifida Association of New York State

Our Mission: To build a better and brighter future for all those impacted by Spina Bifida.

Our Vision: We envision a world where everyone impacted by Spina Bifida is accepted and thrives.

Our Values: Support Health & Wellness Awareness Respect & Dignity Empowerment

History: SBANYS was formed in 1993 by a small group of local parents whose children were born with Spina Bifida. This core group of parents met through a local Spina Bifida clinic and volunteered to support a handful of local families in the Capital District. They then went on to hire their first part-time Executive Director in 2001. In 2007, the Association moved into its first official office space in Soch Plaza. In 2022, the organization officially changed its service area from Northeast New York to all of New York State. The organization was then granted a name change to meet the scope of consumers and services provided and officially updated its name to Spina Bifida Association of New York State. Shortly after SBANYS moved to a new office to meet the depth and breadth of services provided by the organization. As of 2025, SBANYS serves over 400 families, including adults with Spina Bifida, young children and their parents, siblings, and hundreds of service providers. We have grown to include both full-time and part-time employees, along with numerous interns. Our team consists of individuals with and without Spina Bifida, including family members and professionals specializing in advocacy, social work, marketing, and nonprofit management.

The Spina Bifida Association of New York State (SBANYS) aims to build a better and brighter future for all those impacted by Spina Bifida. Our services are available across the state and lifespan at no cost. To achieve our mission, we focus on clinical care, advocacy, education, and programming. This includes case management, hospital partnerships, clinic enhancement, awareness and education initiatives, legislative advocacy and self-advocacy skill building, and programs that provide support, connection, and empowerment. As the sole affiliate chapter in our state, we work tremendously hard to serve the whole health needs of our consumers, their immediate families, and professional care network.