Childhood Cancer Awareness Month is always a time of great action for us, and this month is no exception. We started the month by promoting and participating in a Twitter chat with Dr. Souweidane and Jeffrey Greenfield from Weill Cornell and David Walker from the University of Nottingham on High Grade Pediatric Brain Tumors: Research, Discovery and Roadblocks. This effort was coordinated in part by the Ty Louis Campbell Foundation and supported by several CAC2 foundations, of which we are one. It was rewarding to see a couple of our questions around data sharing and tissue access addressed on this international stage. If you’d like to read a recap of the chat, you can find our synopsis here: https://twitter.com/i/moments/1039918749527232512
We also had an opportunity to meet with the Board of Directors for Our Brain Bank in Brooklyn, NY to learn more about their mission to help brain cancer patients be more empowered in tracking their care. There is a movement to integrate patient reported data into the official medical record, and we hope to find ways to work with them and others to further include this critical avenue of information both for clinical care and for research purposes.
We had a booth at the Celebration Cancer Superheroes 5k Fun Run to support pediatric cancer research and strengthened our community connections in Orlando, FL, where the runDisney program is centered.
We also had a booth at the nation’s largest pediatric cancer awareness event, CureFest, where we shared information about Dragon Master Foundation, the Children’s Brain Tumor Tissue Consortium and the Gabriella Miller Kids First Data Resource Center. Press releases were issued this month regarding the launch of the Kids First Data Resource Portal and a new, unpublished set of 1,000 pediatric brain tumor genomes, representing more than 30 pediatric brain tumor types. . For more on that you can read the press releases here (https://www.prnewswire.com/news-releases/chop-led-gabriella-miller-kids-first-data-resource-center-launches-new-nih-funded-childhood-disease-research-portal-300709820.html) and here (https://www.prnewswire.com/news-releases/childrens-brain-tumor-tissue-consortium-launches-first-of-its-kind-pediatric-brain-tumor-atlas-300709152.html)
This week will see us participating in the Biden Cancer Summit in DC with community summits happening around the US and we will end the month by sponsoring a DIPG Roundtable discussion in Washington, D.C.
Research is only possible because of action. The first action is from the patient to give permission to do the work. It could be argued that the second action needed is for the community to fund the research because so little funding comes from the government for rare cancer research. (Brain cancer, childhood cancers, and many others are considered “rare” by the federal government.) Every action we take, each movement forward is made possible by our generous supporters. We appreciate every cent you donate to help us fund a future with no cancer.