This is the official discussion thread for the cause The ChadTough Foundation. Its EIN is 47-4041494 and it's a public charity based in Saline, MI. Research more info about the cause on GuideStar and Charity Navigator.
The mission of The ChadTough Foundation is to fund research and raise awareness for Pediatric Brain Tumors with an emphasis on Diffuse Intrinsic Pontine Glioma (DIPG).
The most hated word in the world of pediatric brain tumors is “rare”. “Rare” is the reason there is not enough research being done. “Rare” is the reason there aren’t drugs being developed. “Rare” is the reason there is so little funding. “Rare” is why our kids don’t have more options. The three facts below negate the claim of “rare”:
- Cancer is the number one disease killer of children in America
- Brain tumors are the leading cause of cancer-related death in children
- DIPG is the leading cause of death from brain tumors in children
There is hope for DIPG. A few years ago, several DIPG family foundations joined together with many of the top DIPG doctors and researchers to form what is called the ‘DIPG Collaborative’. Of the many great things this collaborative has done, one of the most critical was the launch of the DIPG Registry. The DIPG Registry, funded almost exclusively by small family foundations, has become an international registry of DIPG patient data including basic patient information along with MRI scans and tumor tissue. As surgical biopsy techniques become safer and as more parents become aware of the value of donating tissue postmortem, researchers are finally getting access to DIPG tissue. This is truly exciting!
After decades of nothing, there are discoveries being made about DIPG almost on a monthly basis. In May of 2014, an amazing discovery that there are 3 molecular distinct subgroups in DIPG. In May of 2015, a possible therapy.