Bobby Jones Chiari & Syringomyelia Foundation

Ensuring patients transition successfully from pediatric to adult care. Many brain and spine conditions are typically treated by pediatric neurosurgeons because they are often present from birth. Thanks to big improvements in treatments for conditions like spina bifida (a birth defect affecting the spine) and hydrocephalus (a buildup of fluid in the brain), many of these patients are now living long, healthy lives into adulthood.

This progress, however, creates a new challenge: many pediatric neurosurgeons who have cared for these patients for years may not be able to continue treating them once they become adults. This can happen because of rules about who doctors can treat, especially if they work at hospitals just for children.

To address this, we’re working closely with the Transition of Care Committee within the AANS/CNS Joint Section for Pediatric Neurosurgery. Our goal is to understand how patients currently move from pediatric to adult care and to find ways to make this process better in the future. We’ve already shared some of our initial findings and are eager to continue this important work. It’s crucial that patients with these conditions don’t lose access to specialized care just because they’ve become adults.

BJCSF is dedicated to making sure these patients, who often have conditions typically seen in children, continue to receive the care they need throughout their lives!