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We write to share with you that the Collaborative Ependymoma Research Network (CERN) Foundation and the National Brain Tumor Society (NBTS) have entered into a formal collaborative effort to raise financial support for ependymoma research and education. Statistically rare, ependymomas occur in both adults and children and, unfortunately, relatively few experts in the area of this brain and spine tumor type exist throughout the world. Patients and families deserve to be able to go to one place for support, education, and to know who the leaders are in their disease area. This is a major goal of our new effort, as is the intention to spur innovative research.
Since 2006, CERN has been providing support to ependymoma patients and families as well as advancing ependymoma research through fellowships and grants from generous foundations and individuals. In addition, CERN has fostered and facilitated the development of a group of clinician-researchers that care and put a focus on ependymoma.
During the past several years, CERN and NBTS have collaborated to raise public awareness through a beautiful butterfly release ceremony in recognition of Ependymoma Awareness Day during NBTS’s annual advocacy event in May called Head to the Hill.
The new collaborative effort launches the Ependymoma Fund for Research and Education for CERN located at the National Brain Tumor Society. The Fund encourages and enables those wishing to make a gift to benefit CERN to do so. Donations to the Ependymoma Fund will be used to support research efforts that continue in the tradition of CERN’s focus on supporting work that translates basic science into clinical practice. Additional funds will support educational and patient outreach efforts, including awareness events and initiatives to increase patient enrollment in ependymoma clinical trials.
Our collaboration also enables CERN to utilize NBTS nonprofit platforms improving CERN’s reach and ultimately, impact. NBTS is pleased to partner with CERN and through this joint effort, to help patients, families, and researchers working to find a cure.
We invite you to learn more about the Ependymoma Research and Education Fund as well as keep up on the latest ependymoma news.
We are excited to begin this new chapter in ependymoma research and patient advocacy together as partners.
As always, we greatly appreciate your continued support and dedication.
With sincere gratitude,
David F. Arons, JD CEO National Brain Tumor Society