Why was Kortney Rose Foundation created?

The Kortney Rose Foundation (KRF), a 501(c)(3) charity, was established in 2006 by Kristen and Rich Gillette after Kortney, their nine-year old daughter’s, life was tragically cut short from a rare brain tumor, Diffuse Intrinsic Pontine Glioma (DIPG) located in her brainstem. Kortney was a healthy, boisterous child who was the picture of health on her 9th birthday on November 27, 2005. Two weeks later her mom noticed Kortney’s eye had crossed. After a trip to the eye doctor and an MRI, Kortney became a brain tumor patient. Less than 5 months later she had succumbed to the disease.

Upon diagnosis hearing that there was no effective treatment or cure for Kortney’s tumor, and that it was just about giving her the best quality of life for her remaining time, was unacceptable. We then learned that less than 4% of the federal cancer research budget is allocated to all forms of pediatric cancers. We felt compelled to do something in Kortney’s name to create her legacy of helping other children with brain tumors through the promise of research funding.

KRF’s mission is to eradicate pediatric brain tumors by supporting the world’s most promising, collaborative research leading to our vision of a day when a brain tumor diagnosis doesn’t define a child’s life. With a battle cry of “Help Get Brain Tumors Off Kids’ Minds,” the Foundation is responsible for over $2.6 million donated to pediatric Brain/Central Nervous System (CNS) tumor research since 2007. KRF prioritizes collaborative research and was one of the founding partners, and remains one of the most loyal supporters of, the Children’s Brain Tumor Tissue Consortium (CBTTC) now the CBTN.

What are the goals of Kortney Rose Foundation?

My goal (Kristen Gillette, Kortney’s Mom) is to support research with the hopes of seeing a breakthrough that will help these children in my lifetime.

What is the focus of Kortney Rose Foundation's efforts?

KRF has funded all aspects of the “bench to bedside” path of research. Through the CBTN we’ve supported the harnessing of data and specimens. We’ve donated to pre-clinical projects that test feasibility, as well as clinical trials that actually touch the patient. KRF’s clinical trial support goes further with the recent appointment of Dr. Cassie Kline, Director, Neuro-Oncology Clinical Research at Children’s Hospital of Philadelphia (CHOP) as the inaugural Kortney Rose Foundation Clinical Researcher in Neuro-Oncology. We’ve supported projects for many different types of Brain/CNS tumors and are not tumor specific in our funding.

In what ways does Kortney Rose Foundation support the brain tumor community?

Our primary focus is raising funds for research. We also help to advocate and educate the public to the fact that brain tumors are the #1 cause of death by disease in children, only receive 4% of federal research funding annually, and that Data Sharing and Collaboration are imperative to accelerate findings.

After Kortney died, her mom Kristen set out to learn more about the research process and the current grant funding methods from doctors at CHOP. As a parent who had just lost a child, Kristen naively asked the doctors why all pediatric researchers/doctors didn’t work together. Part of the explanation included researchers being rewarded with grant funding and status based on publications of their discoveries, which could take years. This has stifled discovery at our children’s expenses. Parents don’t care about a researcher getting published or receiving credit; it’s about saving our kids’ lives!

Luckily, within a couple of years of that conversation that doctor called Kristen and said, “We’re going to do what you wanted to do. We’re starting the Children’s Brain Tumor Tissue Consortium (CBTTC) where four major U.S. children’s hospitals will collaborate, sharing data and specimens to accelerate discovery.” From that moment on, KRF pushed our donations “all in” and have been supporting the CBBTC, now CBTN, ever since. We only support researchers that are sharing specimens and their findings immediately to eliminate silos and accelerate cures.