Chapter Background

Our History: SBA of NENY 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 over 200 families, including adults with Spina Bifida, young children and their parents, spouses and grandparents. The current Board of Directors contains parents of affected children, adults with Spina Bifida, and community members.

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 families with newborns with Spina Bifida
  • Support groups
  • Advocacy for those with Spina Bifida
  • Financial scholarships
  • 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 and surrounding areas.

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