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SOMETIMES CHOOSING A CANCER TREATMENT ISN’T THE TOUGHEST DECISION

Hearing that your child has cancer sends your world into a tailspin. Hearing that they have a lethal form of brain cancer that really has no treatment path is devastating. It’s the kind of thing people carry with them for the rest of their lives. One form of brain cancer, DIPG, has been had very few treatment advances in decades. A big part of the reason for this is that so little is known about how the cancer develops and grows. Typically, biopsies are not performed because of the tumor’s brainstem location, and what scientists do learn is often from tissue taken after a child has passed away. That is an issue, too, because it is a difficult conversation for most medical practitioners to have with these already vulnerable families. We reached out to a very generous family who donated their daughter’s tissue to research, and they agreed to share their story. We hope that it will inspire others to think about whole brain tissue donation. Interview with Kindra Adams, mom to Addison Click Here to Read the entire interview...

SOMETIMES CHOOSING A CANCER TREATMENT ISN’T THE TOUGHEST DECISION

Dragon Master Initiative works closely with the National Cancer Institute (NCI) and more than 32 hospitals as part of the Children’s Brain Tumor Network (CBTN). We have helped develop a large-scale database that houses genomic, clinical and environmental data on pediatric brain tumors, and that can be used as a model for research into other types of cancer and rare disease. We support open data projects that share data with the world — not just a select group of hospitals — and that share that data as quickly as possible so we can impact patients of today.

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