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 is 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. Already dealing with a dying child, then hearing this fact, I became compelled to take action. Right after Kortney’s passing we began The Kortney Rose Foundation (KRF) to fund research and raise awareness for pediatric brain tumors. Our Foundation slogan is “Help Get Brain Tumors Off Kids’ Minds”. I honestly don’t like asking for money and never had plans to be a fundraiser, but life had other plans!
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 threatened by this disease. Our vision is to create a world where brain tumors are preventable and/or curable so no parent, will hear the words we did, “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). Our hope was always to fund collaborative “team science” research. Through our partnership with the CBTTC and the relationships and tools they’ve built we are doing just that.
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. With our interest in collaborating on all fronts, it seemed an apparent next step that the foundations who fund collaborative research would work together in the same manner. KRF was a primary funder, and continues to be a large supporter of the Open DIPG research project, so teaming up with other foundations and Eric was another great opportunity to spread the word and fund research for DIPG and beyond.