DIPG as Ambassador to Congress and the Public for Childhood Cancer

The Public needs powerful examples attain sufficient awareness to ensure accountability from Congress. If we want childhood cancer legislation like STAR and RACE to truly be supported, to have their respective allocations approved, to build upon and allow greater development and support for pediatric research, the Public must be aware–this is paramount to accountability.

Help us get H. Res. 114 over the finish line!

“…To this day it is not unusual for parents to hear that there are no solutions for their child with DIPG because, ‘the numbers aren’t great enough for investors,’ in the wealthiest country in the world boasting the greatest technologies. DIPG children walk bravely toward their death as their bodies decline, in full awareness of what is happening to them in most cases, as their parents must witness this in utter helplessness…” This is not unusual for most exclusively pediatric cancers; in our medical research industry today, all pediatric cancers are marginalized as rare and receive inadequate research funding. Smaller patient populations are overlooked, but cumulatively, over decades, these are large numbers of children dying.

Because of the recent #Moonshot4Kids Congressional Briefing in Washington DC, “DIPG, Pediatric Brain Cancer, and the Importance of H. Res. 114 and the conversations between CBTTC, PNOC, and officials at NIH, a novel SPORE Grant proposal is underway targeting pediatric brain cancer, and is to be multi-institutional in its reach–unprecedented and critical to pediatric cancer research. Because of the awareness raised to the chronic neglect of pediatric cancer research due to the way our medical research system is structured, as Dr. Charles Keller (Scientific Director, Children’s Cancer Therapy Development Institute) so eloquently described in his presentation at the 2-13-2020 briefing, the powers that be heard us and are recognizing the need to work toward filling the gaps in the system through which our children have been falling for decades:

  • Every tool of science and engineering we might dream of is at our fingertips, but the market incentive for quick, high-yielding investment return is low.  
  • The humanitarian incentive for America’s children is high; cancer is the leading disease-related cause of death in children in the United States, with brain cancer topping the list of killers.  Of brain cancers, DIPG claims more children’s lives than any other.

“By drawing attention to the pre-clinical gap, and to the urgent need for solutions for children with brain cancer, and DIPG, H. Res. 114 is a straightforward mechanism to stimulating conversation, innovation and potential new cures.”–Dr. Charles Keller

Currently, PNOC and CBTTC are asking the greater childhood cancer community to write letters of support for this unprecedented SPORE Grant proposal which would help serve the need for change in the way cancer research is conducted–to accommodate genomic data sharing and global collaboration to find solutions for our children afflicted with brain cancer.

“They can’t care if they’re not aware,” said Aimee Dickey, forever 12, over a decade ago… DIPG, in all of its horror, makes a very strong case for pediatric cancer. Use it.

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