About the Nonprofit
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SBANYS provides programs and services to the estimated 4,000 individuals living with Spina Bifida in New York State (NYS), their caregivers/parents, and professionals caring for the community including teachers, therapists, and medical providers. Our services include responding to requests for information/referrals, education outreach, advocacy and awareness initiatives, peer support, systems navigation, and programming. These services are available statewide, at no cost, and benefit individuals living with Spina Bifida across the lifespan.
More specifically, SBANYS provides case management, individual, peer and group support, connections to healthcare and service providers, assistance navigating systems including insurance, transportation, employment, special education, housing, benefits, and disability services, sharing relevant education and resources, and assistance with self and systems advocacy. SBANYS offers a hybrid of live and virtual opportunities to receive support, education, networking, and community connections. Examples include virtual programs (peer support groups, educational webinars), an Employment Training Program for young adults with Spina Bifida to gain workplace skills, an Equipment Exchange Program which helps connect individuals in need of equipment to people seeking to donate equipment they are no longer in need of, and regular community awareness trainings to combat disability stigma and promote inclusion and accessibility. In addition to our Case Management services and programs, SBANYS' offers education via social media, monthly e-news and a quarterly newsletter, welcome packets for individuals and families new to the organization, financial scholarships, and collaborates with Spina Bifida clinics in NYS.
Spina Bifida occurs in the first month of pregnancy when the spinal column does not close or form properly, leaving nerves exposed and resulting in damage to the spinal cord. Those who are born with Spina Bifida often live with mobility limitations including paralysis, often requiring the use of assistive devices (orthotics, crutches, wheelchairs), bladder, bowel, and gastrointestinal disorders, hydrocephalus, mental health, executive dysfunction and learning disabilities and are at greater risk for obesity and latex allergy. This complex and chronic condition is further exacerbated by the fact that Spina Bifida is considered a snowflake condition. No two people are impacted exactly alike. The severity depends upon the size of the opening, the location on the spine, and the degree of nerve damage. While there is no cure for Spina Bifida, treatment includes different types of therapies, surgeries, and medications to manage physical complications. We know the earlier a person with Spina Bifida receives care, support, and education, the more capable they are to face these challenges.
