Spina Bifida Of Western New York Inc

About Spina Bifida of Western New York, Inc.

Founded in 1973, Spina Bifida of Western New York, Inc. is a registered 501(c)(3) nonprofit organization dedicated to enhancing the lives of individuals living with Spina Bifida across the eight counties of Western New York. We provide resources that support quality of life, foster meaningful social connections, and promote equal access to inclusive education, extracurricular activities, and comprehensive medical care.

Our programs and events are designed to serve individuals of all ages with Spina Bifida and are delivered in collaboration with families, medical professionals, service providers, community organizations, and dedicated volunteers. Thanks to the generosity of our donors, many of our services are offered at low or no cost.

Our board of directors includes individuals living with Spina Bifida, parents of children with the condition, and committed community members, ensuring that our mission is driven by lived experience and a deep understanding of the needs of our community.

What We Do:

1. Provide financial assistance and reimbursement programs to support medical, educational, and accessibility needs
2. Host social, educational, and recreational events to reduce isolation and build community
3. Offer advocacy and resource navigation to empower individuals and families
4. Collaborate with healthcare providers and educators to promote best practices and accessibility

About Spina Bifida:

Spina Bifida is the most common permanently disabling birth defect in the United States. It occurs when the spine and spinal cord don’t form properly, often resulting in physical and intellectual disabilities that vary in severity. While there is no cure, proper medical care and support can help individuals with Spina Bifida lead full, active, and independent lives.

Today, approximately 166,000 people in the United States are living with Spina Bifida, including an estimated 4,015 individuals in New York State.

The mission of Spina Bifida of Western New York (SBWNY) is to empower individuals and families affected by Spina Bifida to live full, enriched lives by fostering a supportive community built on strong relationships, advocacy, education, and compassionate support.