News to Use

The Informed Patient Podcast

Spina bifida, a birth defect that can have effects ranging from mild to severe, requires specialty care, which Upstate Medical University provides through its Spina Bifida Clinic. Nienke Dosa, MD, a professor of pediatrics and the medical director of the Spina Bifida Clinic, and Julia Duff, executive director of the Spina Bifida Association of New York State, explain what is understood about the condition and how it is sometimes treated with surgery before birth. “The Informed Patient” is a podcast that covers health, science and medicine, featuring experts from Central New York’s only academic medical center. Upstate Medical University has four colleges (Medicine, Nursing, Health Professions and Graduate Studies); a robust research enterprise; and an extensive clinical health care system that extends way beyond Syracuse. Click here for more: https://www.upstate.edu/informed/

Blogs

From Birth to Beyond: Mary’s Story
By Spina Bifida Association of NYS / November 18, 2025

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
By Spina Bifida Association of NYS / November 12, 2025

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
By Spina Bifida Association of NYS / November 4, 2025

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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Adaptive Recreation
By Spina Bifida Association of NYS / October 15, 2024

Adaptive Recreation

There is power in play~ Adaptive recreation can be a crucial part in someone's life as it has a positive...

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Self Advocacy
By Spina Bifida Association of NYS / October 10, 2024

Self Advocacy

Advocating for yourself as a person with a disability can be challenging, but it's an essential skill. A 16-year-old girl...

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In an emergency, are you prepared?
By Spina Bifida Association of NYS / September 1, 2024

In an emergency, are you prepared?

Emergencies and disasters can strike quickly and without warning, forcing people to quickly leave or be confined in their home...

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