Helping a Vision Become Reality: Reflections on the Growth of CBTN from Kortney Rose Foundation Co-Founder, Kristen Gillette

As Kortney’s parents and the Founders of the Kortney Rose Foundation (KRF), my husband Rich and I could not be more proud and grateful to have had a front row seat to the building and growth of the Children’s Brain Tumor Network (CBTN). Our daughter Kortney had just turned 9 when she was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) and passed away less than five months later. I knew nothing about research, nor running a foundation, but I believed I had the passion to create Kortney’s legacy of helping other children through the promise of research to Help Get Brain Tumors Off Kids’ Minds.

I look back at the worst time in our lives, to realize that we were in the right place, at the right time, with the right mission. Kortney had excellent care at the Children’s Hospital of Philadelphia (CHOP) and we had built a trusting relationship with the doctors there. After she passed, armed with a sense of purpose and minimal knowledge, I set out to make a difference in Kortney’s name. First, I needed to learn about research funding and turned to Dr. Peter Phillips, then CHOP’s Section Chief of the Division of Neuro-Oncology. He spent an inordinate amount of time with me in meetings, via email, and on the phone to give me an overview of the current pediatric cancer research landscape and the dismal facts regarding funding.

My resounding question to him was, “Why don’t all researchers and doctors in the pediatric brain tumor research field collaborate so no one is duplicating efforts?” He explained how the current research model worked, shared my frustration, and said he understood this model needed to change.

Opened in 2007, The Kortney Rose Foundation (KRF) began funding brain tumor research at CHOP. At the end of 2009, two years after that initial conversation, Dr. Phillips approached us to share a plan to create the Children’s Brain Tumor Tissue Consortium (CBTTC). The vision was that initially CHOP and three other US pediatric hospitals would share brain tumor specimens and data to work collaboratively to accelerate research findings. This was our dream; so, The KRF was all in. From 2007 through 2021, most or a considerable portion of our annual donation amounts, totaling over $2.8 Million have helped to the build and grow what is today the Children’s Brain Tumor Network (CBTN).

To this day, I’m still in awe of how much access we had to the best minds in pediatric brain tumor research and how they all made us feel like an integral partner. Once we met Dr. Adam Resnick and Dr. Jay Storm, we became more enveloped, and things accelerated quickly. What started with four US institutions is now 26 worldwide and growing. The first outcome report we received from the CBTTC mentioned that The KRF funding supported the sequencing of CHOP’s initial 300 specimens. Today there are more than 50,000 specimens in the CBTN. And through Project Accelerate, in which whole genome and whole exome sequencing for the entirely of CBTN’s cohort of study participants will be conducted this year, CBTN’s Pediatric Brain Tumor Atlas is expected to grow exponentially, allowing for a whole new era of discoveries into the underlying biology of pediatric brain tumors. To see the vision become a reality has been extremely rewarding.

On December 31, 2021, we closed The Kortney Rose Foundation after almost 16 years. We continue to support the CBTN with the Kortney Rose Foundation Legacy Fund under the CHOP Foundation umbrella.  We will miss working with the team of amazing people we’ve met on this journey. We are confident that those involved today will bring the CBTN to even greater heights.

Kristen Gillette
Parent, Co-Founder
The Kortney Rose Foundation