Each month, the Children’s Brain Tumor Tissue Consortium highlights the stories and contributions of families, foundations, and researchers to find cures for pediatric brain tumors. If you would like to share your story as a guest blogger, please email firstname.lastname@example.org.
By Kristen Gillette, Founder/Executive Director of The Kortney Rose Foundation
I’ve had many defining moments in my life but some have been more defining than others. When I was 21 I lost my mother suddenly to a heart attack. Less than a year later, my 27-year-old cousin Gerry, who was like a brother to me, died of a brain tumor. These were my first experiences with grief.
After losing a full term baby shortly before getting pregnant with Kortney, we were extremely grateful to have a healthy girl in November 1996. A month before Kortney started Kindergarten and her older sister Kasey started 3rd grade, we took a vacation to visit my dad in North Carolina. Within 24 hours of arriving there we were in a terrible car accident, which left Kortney with a skull fracture and traumatic brain injury. She was in the ICU for nine days and we almost lost her in the first crucial days. She went through seven months of physical, occupational and speech therapy to counter the effects of the brain injury and amazingly returned to her self. This was the first test of Kortney’s resilience and where she earned the nickname “one tough cookie.”
Kortney advanced through school with no issues and on November 27, 2005 celebrated her 9th birthday. She was the picture of health, and the accident what a thing of the past. Two weeks after her birthday she was sleigh riding before school. I was watching her and when she looked up and smiled at me I noticed her eye was crossed. After school we went to an eye doctor and you all know the rest of this story! This made the previous defining moments pale in comparison.
When I heard the fact that only 4% of NCI funding goes to fund all types of pediatric cancer research, this defined my future path. After Kortney’s death we started the foundation and I had many conversations with Dr. Peter Phillips about funding research. I naively asked him, “Why don’t all of the researchers collaborate to find answers quicker?” In 2007, The Kortney Rose Foundation began funding Neuro-Oncology Research at CHOP with guidance from Dr. Phillips. In 2009, Dr. Phillips asked me to come to CHOP to speak with he and Dr. Tom Curran. He excitedly told me, “We are going to do what you wanted and set up a consortium to collaborate with other institutions on brain tumor research and it will be called the Children’s Brain Tumor Tissue Consortium.” I’m grateful to have been included in those visionary discussions with Drs. Phillips and Curran and that The Kortney Rose Foundation was one of the primary funders of the research being done in the CBTTC. It’s exciting to see where we are today because of the infrastructure and growth provided by the CBTTC. When we started funding research in 2007 at one lab at CHOP, I never envisioned being where we are today with implications for discovery way beyond pediatric brain tumors.
This is another defining moment for all of us!