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About Our Organization

Our History:
SBANENY was formed in 1993 by a small group of local parents whose children were born with Spina Bifida. Since then, the organization has grown, now serving people of all ages with Spina Bifida and their families, as well as the service providers, health care professionals, and educators who serve them.

Our Services:
Services provided include information and referral, support, advocacy, awareness and educational programs. We provide:

  • Opportunities to network with other individuals and
   families affected by Spina Bifida.
  • Quarterly newsletter and periodic e-news
  • New-parent packets for newborns with Spina Bifida
  • Support groups
  • Advocacy for those with Spina Bifida
  • Financial scholarships
  • Regional Spina Bifida conferences
  • Equipment exchange
  • Lending library
  • Prevention Education – folic acid awareness
  • Public education and awareness about Spina Bifida

Our Service Area:
While our service area is northeastern New York, as the only chapter of the national Spina Bifida Association in New York State, we also respond to calls from individuals and families throughout the State.

For more information about our Chapter, click here.
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Special Thanks to:
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