The Gift from a Child Initiative, primarily funded by family-founded nonprofit The Swifty Foundation, has designated the Children’s Brain Tumor Project at Weill Cornell Medicine to serve as its fifth named “Center of Excellence” in the US. The initiative will enable the expansion of the pre-existing legacy donation program at the lab by funding an individual tissue navigator position over the next three years. This individual will educate patients, families, and staff about the value of tissue donation, assist patients and families with the logistics related to making such a donation at the time of a child’s death, and coordinate tissue donations from other local and regional centers that don’t have formal donation programs in place.
Tragically, thousands of children die from brain tumors every year. Researchers and physicians do not know why the treatments do not work for these children. Until researchers are able to study the brain tissue of children who do not survive their cancer, it will remain a mystery why these children do not survive their disease. More so, it leaves the clinical team in the dark when treating new patients facing similar outcomes.
The Gift from a Child program addresses this need by facilitating the collection of a critical mass of brain tumor tissue samples to inform scientists on how tumors behave and how to prevent them from forming. Understanding more about each unique tumor type allows doctors to prescribe specific treatments for each individual child. This helps to minimize the harmful side effects of many treatments that are currently available, and increases the quality of life for children diagnosed with these diseases.
Due to the nature of the post-mortem program, referrals are made at all hours of the day and night. Without collaborative systems like this in place, and dedicated individuals serving as tissue navigators at each regional site, these precious donations are not be possible.
Centers of Excellence are regional autopsy sites designated to coordinate, process, store, and share post-mortem materials that enable research across institutions and increase information sharing. The collaborative of these centers, including Stanford Medicine, Children’s Hospital of Philadelphia, Children’s National Hospital, Lurie Children’s Hospital, and now Weill Cornell Medicine, delivers best practices in family/patient care and donation coordination. The team at the Children’s Brain Tumor Project is grateful for the support of Gift from a Child, and for the strength of all participating families who are faced with the difficult reality that no child or family should ever have to face.