BJCSF understands the urgent need for effective treatments for craniocervical instability (CCI), and we share the frustration felt by patients and caregivers regarding the pace of progress. To address this, we’re committed to building a strong foundation for future research and improved diagnostics and treatment methodologies.

We’re excited to announce that our initial work (spearheaded by SEA Board members, Dr. Richard Anderson and Dr. Douglas Brockmeyer) was published in the Journal of Neurosurgery Pediatrics earlier this month, focusing on a pediatric consensus definition of CCI. This publication is a crucial initial step. We’ve begun the consensus work in adult patients, which is exemplary of a considerably more complicated patient population. This effort, being spearheaded by SEA Board member Dr. Vijay Ravindra, is aiming for completion by the end of 2025. We expect the publication to be written up in early 2026. Thanks to Susan and Cecil Hawkins for providing the critical funds required to ensure these projects are completed on time and efficiently!

We’re dedicated to working collaboratively to standardize terminology. This standardization is essential for developing high-quality research that will ultimately lead to meaningful diagnostic and treatment options for all individuals affected by CCI. We recognize these projects are just one part of a larger effort to improve outcomes for patients who are left with few options in today’s medical landscape. These are some of our first steps to improving quality-of-life for patients and families living with CCI!