About Us

 

Learn About SBRN
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Faced with the emotional strain and financial expense of caring for children with spina bifida, parents in a number of New Jersey communities formed self-help groups in the early 1970s to share information and support.

In 1982 the Spina Bifida Association was formed as a coalition of these groups. After an exhaustive needs assessment in the 1990s, the services of the Spina Bifida Association were expanded.

In 2000 the Board of Directors voted to expand its outreach from New Jersey to the Tri-State Region (New Jersey, Metropolitan New York and southern Connecticut).

In 2008, due to re-structuring of the Spina Bifida Association of America, the Board decided not to re-affiliate with SBAA. The name changed to the Spina Bifida Resource Network of New Jersey and Metro New York however our goal remained the same: to provide comprehensive supports and services to the more than 7,000 individuals plus innumerable family members and professionals living in New Jersey and metropolitan New York.

Current project initiatives include the Family Support Program of in-home nursing coordination and social services, and innovative tele-groups providing support and information in a format easily accessible from home, educational conferences for families and professionals, social development and recreational programs, and an educational campaign on the prevention of neural tube defects like spina bifida.

SBRN’s Family Support services are funded, in part, by the New Jersey Department of Human Services, Division of Developmental Disabilities.  Programming includes advocacy, networking and legislative efforts, and limited financial assistance through the Special Medical Needs Fund for families that incur extraordinary non-reimbursable medical expenses. Assistance is provided for a myriad of issues including: crisis management, supportive housing, transportation, driver education, vehicle modification, home accessibility modifications, insurance, recreation and respite, and scholarship funding.

SBRN has received numerous national awards for our innovative programs to families and individuals with spina bifida as well as for the professionals serving them.

While SBRN is committed to specialized service to people with spina bifida, collaboration with other agencies promoting similar goals for people with other disabilities enhances the comprehensive supports possible for all individuals and families. Additionally, a unified voice in legislative matters and other issues has enabled us to support and obtain necessary programs and services. To this end, the Spina Bifida Resource Network collaborates on projects of mutual interest with other agencies and organizations.

Developing local resources that enable individuals and families to live successfully within their community is of primary concern to the Spina Bifida Resource Network. Education, training, networking, collaboration and other supports as requested by individuals or families assist people with spina bifida to become fulfilled, productive members of their communities.