Our daughter Kortney Rose Gillette was a vibrant, happy child who had just celebrated her ninth birthday when I noticed that her eye had crossed. An MRI soon revealed that Kortney had a Diffuse Intrinsic Pontine Glioma (DIPG) tumor in her brainstem. This type of brain tumor is the deadliest for children. DIPG tumors form in the area of the brainstem that controls a child’s breathing, blood pressure, heart rate and other vital functions. Today, there are no effective treatments for these fatal tumors and they cannot be removed through surgery.
While Kortney was in the hospital, the doctors told us that the federal government funds 98 percent of cancer research in the United States. Unfortunately only 4 percent of the National Institute of Health (NIH) annual cancer research budget goes to pediatric cancer research; the rest goes to adult cancer research. The fact that we were losing Kortney to this brain tumor and then finding out these statistics were what compelled me to start The Kortney Rose Foundation to make difference by funding research and raising awareness for pediatric brain tumors.
On April 27, 2006, just four months after diagnosis, Kortney succumbed to DIPG. We knew we had to take action to help make a future possible for other children threated by this disease. Our vision is to create a world where brain tumors are preventable and/or curable so no parent whose child is diagnosed with DIPG or any other brain tumor, will hear, “There is nothing we can do to treat or cure this tumor; it’s about providing Kortney with the best quality of life for the time she has left”. The median survival time for this tumor is 9 months. Although, DIPG tumor research and finding a cure holds a special place in the KRF’s heart, the foundation funds all types of pediatric brain tumor research and is responsible for nearly $2 million donated to pediatric brain/central nervous system tumor research, and was an original research partner that helped to establish the Children’s Brain Tumor and Tissue Consortium (CBTTC).
In March 2018, Al Gustafson of the Swifty Foundation invited The Kortney Rose Foundation, to team up with their foundation, Pediatric Brain Tumor Foundation and Dragon Master Foundation to help launch Four Pennies, a collaborative crowdfunding campaign for childhood brain tumor research. For this campaign, hiker Eric Montgomery will hike the Pacific Crest Trail (PCT) over the next four months. The goal is that the 4.6 million steps Eric will take, four pennies will be raised per step, with a total of $185,000 toward research. All of Four Pennies donations will be invested in Project Open DIPG, a collaborative research effort by the Pacific Pediatric Neuro-Oncology Consortium (PNOC) and the Children’s Brain Tumor Tissue Consortium (CBTTC).
The Kortney Rose Foundation is fighting to “Help Get Brain Tumors Off Kids’ Minds”. Being that the foundation was a primary and continued large funder of the Open DIPG research project, teaming up with the other foundations and Eric was another great opportunity and important initiative to spread the word and fund research for DIPG.