Why Diagnosis Looks Different Across Types of Spina Bifida
Did you know Spina Bifida can be diagnosed at different times in life? Some forms, like Myelomeningocele and Meningocele, are often...
Read MoreSBANYS Featured on WNYT News Channel 13
The Spina Bifida Association of New York State was featured on WNYT News Channel 13 in early February, highlighting ongoing advocacy efforts to improve the lives of individuals impacted by Spina Bifida.
The feature followed a press conference at the New York State Capitol in Albany, where SBANYS leaders called on lawmakers to include $250,000 in the state budget to expand programs and services for the Spina Bifida community. During the interview, Executive Director Julia Duff and Board Member Joe Slaninka discussed the organization’s mission and the impact of this proposed funding on families across New York State.
From Awareness to Action: Turing Your Voice into Legislative Change
This session focuses on turning awareness into practical advocacy. Featuring Julia Duff, Executive Director of the Spina Bifida Association of New York State, and Cliff Perez, it includes guidance on staying informed, building connections, and developing structured efforts that can lead to legislative progress.
Blogs
Spina Bifida Myelomeningocele: What Does Daily Life Look Like?
Spina Bifida Myelomeningocele: What Does Daily Life Look Like? Here’s a closer look: Mobility support (wheelchairs, braces, adaptive equipment) Bladder...
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The Three Types of Spina Bifida: What’s the Difference?
Did you know there are three different types of Spina Bifida? Myelomeningocele – A sac of fluid is visible on the...
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Spina Bifida Occulta: the Hidden Form of Spina Bifida
Many have it and don’t know: Spina Bifida Occulta Spina Bifida Occulta means “hidden split spine.” In Spina Bifida Occulta,...
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Voices of the Spina Bifida Community: Lisa’s Story
Meet Lisa Lisa is 60 years old and lives in Ronkonkoma, New York. She describes herself as outgoing, empathetic, and compassionate,...
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Voices of the Spina Bifida Community: Christina’s Story
Meet Col. Christina Fanitzi Christina lives in West Point, New York and is a career U.S. Army Officer with more...
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Voices of the Spina Bifida Community: Allison’s Story
Meet Allison She is a 38-year-old from Averill Park, New York. After a lifetime of living with Spina Bifida, undergoing...
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Prenatal Testing
Expecting a baby? Spina Bifida can sometimes be detected before birth using prenatal tests, giving families time to plan and...
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Prenatal Closure & Postnatal Closure
Learning your baby has Spina Bifida can feel like a lot to take in, but there are clear paths forward....
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After a Spina Bifida Diagnosis
A Spina Bifida diagnosis can feel overwhelming, but it is not the end of the story. Suddenly, there is so...
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