About Us


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• Mission
• Values
• Vision
• Background
• Services
• Service Area
• Disclaimer



Our Mission

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

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Our Value Statement

Our purpose is
Health & Wellness
Respect & Dignity

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Our Vision

We envision a world in which no pregnancies are affected by Spina Bifida. 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.

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Chapter Background

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.

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Our Services

Services provided by the chapter 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


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Our Service Area

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

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The information on this web site is not intended to be, nor is it, medical advice on the management or care of a person with Spina Bifida. Although every effort is made to assure that information is accurate and current, knowledge in the field of spina bifida is growing rapidly and all data is subject to change without notice. Neither Spina Bifida Association of Northeastern NY (SBANENY), nor any parties who supply information to this system, make any warranty concerning the accuracy of any information found on or exchanged through this system. No endorsements of any products which appear on this web site are given or implied by SBANENY.  SBANENY does not endorse any specific medical regime. You should not change your medical schedules or activities based on the information provided at this site. Always consult with a doctor/healthcare provider/medical professional before making any medical decisions. Please note: SBANENY does not employ medical personnel in their national office. If you have a specific medical question regarding spina bifida please contact a spina bifida clinic or your physician. By navigating this web site, you waive any and all claims relating to the usage of material or information supplied by SBANENY.

Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history. Persons with Spina Bifida are urged to discuss their particular symptoms and situations with their personal physician.

Notice: The information provided here is for informational, educational and entertainment purposes only. It is not intended to replace, and should not be interpreted or relied upon as, medical or professional advice. Your use of this site means that you agree to the terms and conditions detailed in our disclaimer.


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