The short answer is that your donations go directly into the hands of families with children fighting DMG/DIPG brain tumors and funding research for a cure of this disease.
Here's the long answer; when Noah was in the midst of his 16 month battle with terminal brain cancer, we turned to foundations for help with bills, groceries, and medical expenses. Because there is currently no earthly cure for these types of brain tumors, Noah's treatment took us from our home hospital, Vanderbilt Children's in Nashville, TN, to the University of Michigan in Ann Arbor, and Duke University in Durham, NC, where the most promising trials at the time were being held. Noah's dad was a self-employed physical therapist, and because of the significance of Noah's diagnosis and treatment, he was unable to keep the doors of his office open during Noah's journey. We became fully reliant on the generosity of others to help us navigate the financial strain of Noah's brain cancer battle.
Most of the foundations we connected with would offer assistance for one bill for one month, or a one-time lump sum to help with whatever we needed. While we were very thankful for that, the battle didn't last just one month, it lasted for 16. And those 16 months were full of the most exhausting emotional, spiritual, and physical battles as we researched, prayed, hoped, and pleaded for Noah's precious life to be sparred on this side of eternity.
We also learned through Noah's journey that the government only gives 4% of its yearly budget to pediatric cancer research, and an even smaller portion of that goes towards brain tumor research, which is the leading cause of pediatric cancer deaths. The trials Noah enrolled in at the University of Michigan and Duke were funded by different foundations, namely the ChadTough Defeat DIPG Foundation and the Pediatric Brain Tumor Foundation. These, along with other foundations, like Storm the Heavens, Tough2Gether, and Arms Wide Open, are providing the funds necessary to research better treatment options for kids being diagnosed with this terrible disease. It is our honor to partner with such organizations to help fund research and continue advocating for change on behalf of our children.
It was through our experience that God began to stir in our hearts the idea for the NoahBRAVE Foundation. We would exist to help families in their journeys with brain tumors not once, but through the entire battle from diagnosis to healing and beyond. We would also help support research for a cure since pediatric brain tumor research is way underfunded and there is currently no known cure and most doctors tell parents upon diagnosis, “I'm sorry, but there's not much we can do. They have 6-12 months. Go home and make memories.”
The NoahBRAVE Foundation is helping to fund the expansion of the CAR T-Cell therapy trial at Stanford University. This trial is showing to be one of the more promising trials to treat DMG/DIPG brain tumors.
CAR T-Cell therapy is a type of immunotherapy, which increases the capacity of immune cells to fight disease. A type of white blood cell called a T-Cell is collected and genetically modified to develop a chimeric antigen receptor, or CAR. Those CARs latch onto a specific antigen on the surface of the cancer cell to disrupt and destroy it.
Our help with funding this trial allows access for more children with terminal DMG/DIPG brain tumors to be treated with hope for prolonged life and ultimately finding a cure.
Learn More"When we first found out that my son had DIPG, our world stopped. There were so many doctor appointments, hospital visits, phone calls, therapy sessions and just getting from point a-to-point-b. I couldn't even think straight and my only objective was to keep Joseph as happy and comfortable as possible. This isn't as easy as one would think, with bills and obligations that continue to come due. We were very fortunate to have the assistance of The Noah Brave Foundation. This group helped out my family tremendously. We were able to focus on Joseph's care and well-being without any added stress. The ability to spend even an extra few minutes with my son is priceless. We owe a huge debt of gratitude to NoahBRAVE. Thank you for making Joseph a priority and giving us the time to spend with him by taking care of other things for us. And for continuing to help us while we are still grieving. I don't know what I would do without the help that I still need." - Luigina Capi, Joseph's Mom