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!

Updates on the Chiari Surgical Success Scale (CSSS). Chiari malformation is a relatively common disorder, but it’s still hard to tell how well someone will do after surgery for it. This is because patients can have many different symptoms, and there isn’t a lot of high-quality, large-scale information available about their outcomes… yet!The CSSS, which involves multiple medical centers, aims to change that. We’re carefully following a group of patients who are having surgery to figure out what factors lead to a successful– or unsuccessful– recovery. Our ultimate goal is to create a tool that will help doctors, patients, and their families make better decisions about whether to have surgery.