Young Adults With Spina Bifida Face a Crisis in Care
Danielle and Marlon live hundreds of miles apart, but their stories echo one another’s. Both were born with Spina Bifida. Both grew up cared for by…
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Spina Bifida Transition Toolkit
The Spina Bifida Transition Toolkit is broken down into three distinct stages of transition: There are many valuable resources included in this toolkit that are associated…
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Hope Starts Here: Empower Families from the Diagnosis
When Jessica first received her son Parker’s Spina Bifida diagnosis, she felt lost and overwhelmed. Doctors painted a grim picture of what life would look like…
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Managing Bladder Issues with Spina Bifida
Author: Mica Phillips, Director, Aeroflow Urology Depending on the severity, Spina Bifida can have varying effects on mobility and can end up leading to continence issues…
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Preparing for the Future: Empowering Independence During Transitional Care
For young people growing up with Spina Bifida, navigating the complexities of the adult healthcare system for the first time can be frustrating for both patients…
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Advocacy That Changes Lives: Shoshana’s Story
At just 20 years old, Shoshana Siegel has endured challenges that many of us can scarcely imagine. Born with Spina Bifida, Shoshana has faced a lifetime…
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In Memory of Jennifer, and All Those Still Fighting
We can’t always see pain. But you can create a world where people don’t needlessly suffer. Jennifer was adventurous, giving, and fiercely loyal. She was the…
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Instructions for Submitting Letters on Competitive Bidding to CMS
bLOG Instructions for Submitting Letters on Competitive Bidding to CMS, Sample Letter, and Additional Resources Sample Letter Subject: Comment on CMS-1828-P – Opposing Inclusion of Urological…