ALBANY, N.Y. (Mar. 5) — Today, Senator Patricia Fahy (D–Albany) was joined by Assemblymember Karines Reyes (D–Bronx) and New Yorkers living with Spina Bifida to urge the inclusion of $250,000 in funding for the Spina Bifida Association of New York State (SBANYS) in this year’s state budget. SBANYS is the sole support provider for New Yorkers who were diagnosed with spina bifida.

SBANYS is a state-wide nonprofit helping New Yorkers who are impacted by Spina Bifida. The organization provides institutional support and hosts in-person and virtual events for support providers, healthcare professionals, and the public. In addition, SBANYS contributes nationally by collaborating with other Spina Bifida organizations in the United States.

In the FY2025-26 state budget, SBANYS was funded at $75,000 to support all of its five regional branches. SBANYS is requesting $250,000 in the FY2026-27 budget to support the hiring of regional staff statewide, strengthen education, outreach, and partnerships with hospitals and providers. 

According to the CDC, Spina Bifida affects one in every 2,750 to 2,900 births, and in New York State, 4,000 families are impacted. Currently, SBANYS is limited to serving 700 families in New York State with its budget, which is only 18 percent of the families affected. Moreover, SBANYS shares its support services with nine hospitals and clinics across New York.

This investment would expand its services to disadvantaged communities, particularly the Hispanic community. According to the CDC, 22% of registered Spina Bifida cases occur in the Hispanic community. The NIH suggests that despite the FDA reducing the prevalence of Spina Bifida through mandatory fortifications in folic acid, Hispanic Americans still struggle with high birth rates of Spina Bifida.

“When New York State invested in SBANYS, we proved what is possible. We expanded services statewide, strengthened hospital partnerships, and responded to a growing number of families seeking support,” said Julia Duff, Executive Director, SBANYS. “But we are still only reaching a fraction of the more than 4,000 New Yorkers living with Spina Bifida. An investment of $250,000 would allow us to hire regional staff, close service gaps, and ensure that no family—regardless of where they live—has to navigate this complex diagnosis alone.”

“Individuals and families living with Spina Bifida in New York State face significant challenges receiving accurate information, quality healthcare, and peer support,” said Senator Patricia Fahy (D—Albany). “More than 4,000 New Yorkers live with Spina Bifida, yet the support and care system for these individuals remains lacking, despite the outstanding work of the Spina Bifida Association of New York State. This year, New York can make a clear commitment to the Spina Bifida community at a time when the federal government is weakening supports for New Yorkers living with disabilities and meaningfully invest in quality care and support for the thousands of New Yorkers living with Spina Bifida.”

“Too many families in our state are navigating Spina Bifida without the services and resources they need," said Senator Lea Webb. "Increasing funding to $250,000 in the State Budget would strengthen regional staffing, expand education and outreach, and help build the critical partnerships with hospitals and providers that families rely on every day. Investing in SBANYS is an investment in the health of thousands of New Yorkers, and ensuring everyone affected by this condition has the support they deserve."

"This prudent investment will help New Yorkers with Spina Bifida live longer, healthier, more rewarding lives. It will provide resources to alleviate pressures on their families and caregivers and ensure that the community is aware of cutting-edge research and implementing best practices. I'm proud to support it, and I urge the governor and all of my colleagues to also do so," said Senator Jake Ashby.

“As Chair of the Assembly Health Committee, I am proud to stand with the Spina Bifida Association of New York State and the families who rely on their support,” said Assemblymember Amy Paulin. “More than 4,000 New Yorkers are living with Spina Bifida, yet only a fraction have access to services simply because SBANYS doesn’t have the funding to meet the demand. Families shouldn’t have to fundraise to get essential services. By increasing state investment in this year’s budget, we can help ensure that every New Yorker living with Spina Bifida has the resources they need and deserve.”

“Families living with Spina Bifida face significant challenges, but with the right support systems and access to care, individuals can lead full and meaningful lives,” said Assemblymember Pam Hunter. “The Spina Bifida Association of New York State plays an essential role in providing resources, education, and advocacy for families across our state. I’m proud to stand with the parents, advocates, and organizations working to ensure that every New Yorker affected by Spina Bifida has access to the support and services they need.”

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