Path to Independence
Self-catheterization is an important step toward independence for many people with Spina Bifida. It allows individuals to manage their bladder...
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
Monitoring Hydrocephalus
For people living with Spina Bifida, monitoring Hydrocephalus is essential. Shunts help drain excess fluid from the brain, but they...
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Update: Medicare DME Supplier Moratorium
We want to share a brief update regarding a recent six-month Medicare moratorium affecting certain Durable Medical Equipment (DME) suppliers....
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From Birth to Beyond: Mary’s Story
Your Bladder Cancer Checklist Living with Spina Bifida demands extraordinary strength, resilience, and self-advocacy. It’s not just about managing daily...
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From Birth To Beyond: Mary’s Story
Spina Bifida + Bladder Cancer Takeaways A Shocking Realization This blog series has aimed to shed light on the often-overlooked...
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From Birth to Beyond: Mary’s Story
Beyond the Diagnosis: Understanding Cancer’s Hidden Challenges My cancer treatment journey was filled with relentless detours, transforming my life into...
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From Birth to Beyond: Mary’s Story
Scarred but Stronger: Surviving the Side Effects of Cancer Treatment When the surgeon told me they’d found and removed a...
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From Birth to Beyond: Mary’s Story
The Day I Lost My Bladder—but Kept My Life Receiving the formal diagnosis of advanced, muscle-invasive Squamous Cell Carcinoma of...
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From Birth to Beyond: Mary’s Story
Courage Beneath the Surface: Facing a Bladder Cancer Diagnosis After a Lifetime with Spina Bifida I never imagined that being...
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From Birth to Beyond: Mary’s Story
Hi. I’m Mary. I was born with Spina Bifida – Myelomeningocele. Usually by this point, I lose people. Did I...
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