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,...
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
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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Spina Bifida Lifespan Outlook
Hearing “Spina Bifida” can raise questions about the future — especially about lifespan. The good news: advancements in healthcare have...
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Lifelong Health Considerations for Women with Spina Bifida
Women with Spina Bifida experience distinct health considerations throughout their lives, including puberty, reproductive health, pregnancy, childbirth, and menopause. These...
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Birth Planning for Women with Spina Bifida
Many people expect labor to feel the same for every woman, but women with Spina Bifida may experience it differently....
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Early Intervention
For infants with Spina Bifida, early intervention services provide the building blocks for growth, independence, and confidence. From therapy to...
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