Why was Dragon Master Initiative created?
[Amanda Haddock, President]
My son, David, was 16 when he was diagnosed with GBM. He was the first person in my family to have cancer. We were blind-sided, but determined to find a way to help him survive. David was a joy, a true light in the world, and cancer took him from us after only 20 short months. He volunteered for clinical trials knowing it wouldn't help him, but wanting so desperately to help others. In fact, all he ever asked of us was to help other kids with cancer.
After a couple of years of volunteering with established nonprofits, we started Dragon Master Initiative because we couldn’t find a group that was willing to invest in an infrastructure that would benefit researchers everywhere. Most hospitals, and even some foundations, seemed to only want their projects to succeed - we want everyone's projects to succeed. So Dragon Master Initiative’s focus is more on funding the infrastructure to support all research. Our pilot project was with the Children's Brain Tumor Network, but we always had growth in mind. We hoped to include data sets from other types of cancer and rare disease.
We wanted adult and pediatric data side by side. We have genomic and clinical data in the same database, accessible to all and still protected for privacy. We aren't one of the big cancer charities, but we are doing innovative work that will push all of their projects ahead. Many children, like David, have lost their lives and subsequently donated their tissue to make sure we find cures. We work to make sure their gifts are used wisely and for as long as possible.
What are the goals of Dragon Master Initiative?
To push research forward faster through the innovative use of shared data, to change regulatory paradigms and attitudes to increase data sharing, and to decrease the burden on families of children and young adults with cancer and those who face geographical challenges to access quality care.
What is the focus of Dragon Master Initiative's efforts?
Our primary interest is in high grade gliomas, but we go where the data leads us. We support research in areas including Glioblastoma, DIPG/DMG, ATRT, Ependymoma, Medulloblastoma, Crainiopharyngioma, Pineal Parenchymal Tumor with Intermediate Differentiation (PPTID) - All because of direct involvement with families or researchers who have asked for specific help. But we are definitely not limited to those tumor types.
Why does Dragon Master Initiative support the CBTN?
We are loyal supporters of CBTN because of their commitment to collaboration. We believe that data sharing and collaboration are the keys to finding better treatment options and cures for children with brain tumors.