The diagnosis of an incurable brain tumor is an inconceivable challenge that no child or family should have to face. This impossible situation is a driving force behind the Children’s Brain Tumor Project. In the laboratory, in clinical trials, and through vast data-sharing networks including the Children’s Brain Tumor Network (CBTN), we are working hard every day to achieve a single goal: bringing hope to the hundreds of patients and families each year who confront the heartbreaking diagnoses of rare, sometimes inoperable, and often incurable pediatric brain tumors.
In 2019, Weill Cornell Medicine was named a Regional Center of Excellence in the Gift from a Child program, a national initiative designed to increase access to post-mortem pediatric brain tissue donations through advocacy. Gift from a Child was designed by families who have endured the loss of their own children, ensuring that all donations are handled with the utmost care and that the wishes of participating families are prioritized.
Each donation allows collaborating researchers around the world to gain a wealth of invaluable information through molecular, cellular, and genetic analysis of the tissue. It is this information that is so essential to creating a brighter future for the children and families that this disease so greatly affects. The desperate need for tissue samples via rapid autopsy led us to participate in the Gift from a Child program. As a designated Center of Excellence, we are a regional site for coordination, processing and storage of donated tissue. The centers work as a collaborative and example of best practice in family and patient care.
We realize the decision to donate your child’s brain tissue from rapid autopsy is multifaceted and highly emotional, and requires reflection and preparation. We hope we can provide any information and guidance you may need in the process. Most important, we admire your strength in these difficult times. Together we will work toward changing the future of this devastating disease.
Dr. Jeffrey Greenfield and Dr. Mark Souweidane
Co-directors, Weill Cornell Children’s Brain Tumor Project