MILLSTONE June 2018

HEALTH   WELLNESS The Kortney Rose Foundation by Pam Teel &

Kortney Rose Gillette was a vivacious nine-year old girl with a winning smile and unparalleled zest for life. She was in the third grade. She loved playing with friends and animals (stuffed or real) and enjoyed school at Wolf Hill Elemen- tary School in Oceanport, NJ. This didn’t change even after her diagnosis of a terminal brainstem glioma (Diffuse In- trinsic Pontine Glioma -DIPG). Kortney loved basketball and played soccer, but her biggest thrills were at amusement parks and water slides. She was a daredevil with little fear and a spitfire who knew how to get her way. Her smile and laugh would brighten any room she entered or place she visited. She loved to play on her swing set and was always on the move to her next play date.

Kortney was the picture of health at her ninth birthday party on November 27, 2005 where the family celebrated at Funtime America. In the second week of December she had a couple times where she came in from playing and laid on the couch saying her head hurt. They seemed to go away in about 10 minutes and she’d go back and play like nothing was ever wrong. This happened a few more times. A couple of days later she was outside playing in the snow and she looked up and her mom noticed that her left eye was crossed, turned inward. That day she made an appointment with an optometrist who told her that sometimes the “sixth nerve palsy” can be caused by a virus and the eye may go back on its own, but just to be sure she ordered an MRI. It was roughly two weeks later that Kortney’s parents were told by the doctor that she had an inoperable brain tumor. On April 27, 2006, four months after her diagnosis, Kortney lost her brave battle with this pediatric brain cancer. As a way to help channel their grief into something positive, Kortney’s parents set up the Kortney Rose Foundation. Their hopes are to make a dif- ference, in Kortney’s name, in the fight to find better treatments and ultimately a cure for pediatric brain tumors. Their fundraising efforts will directly benefit pediatric brain tumor research. Established in Oceanport, NJ, in 2006, the Kortney Rose Foundation is a 501 (c) (3) charity with the mission of funding research to promote better treatments and cures for brain tumors, the #1 disease killer of children. With a battle cry of “Help Get Brain Tumors off Kids’ Minds,” the foundation is responsible for nearly $2 million donated to pediatric brain/central nervous system tumor research. KRF prioritizes collaborative research, and was an original research partner that helped to establish the Children’s Brain Tumor and Tissue Consortium (CBTTC). About CBTTC With its operation center based out of the Children’s Hospital of Philadelphia (CHOP), the CBTTC is made up of 17 global institutions, operates the world’s largest clinically-annotated database of pediatric genomic data in the world, via CAVATICA, a first of its kind cloud-based, open source platform pioneered by CHOP. These advancements are having implications for broader pediatric cancer and structural birth defect research through the National Institute of Health’s Gabriella Miller Kids First Program with which KRF is involved through CHOP. Brain tumors are the #1 cause of death by disease in children and with only 4% of the federal government’s annual research budget going to kids, its small foundations like this one that are helping to fund this gap to keep research going since the other 96% of the federal government’s cancer research budget funds adult cancer research. To raise money, the Foundation holds many Family friendly events. They recently held a new event called Pony Up for Kids at Monmouth Park. There were pony rides, bouncers, crafts, basket raffle, food in a private picnic area and more. Their signature event, now in its 13th year, is on Sunday, August 5, Kortney’s Challenge 2 Mile Fun Run/Walk. It’s fun for all ages and since it’s a walk and a run anyone can participate. All registered children under 12 receive a custom medal. Free face painting, balloon animals, free food in finish area, grandstand entry to the day of horse racing and more. Brain tumors/ cancer are devastating diseases. DIPG, the kind of tumor Kortney had is fatal in every instance and has a 9-month average survival rate. That’s why the people at the Kortney Rose Foundation are determined and passionate about gathering support for brain cancer research and prevention. Pediatric cancer research needs more support to accelerate findings toward better treatments and cures. They’ve been supporting brain tumor research at CHOP and were instrumental in helping them build the Children’s Brain Tumor Tissue Consortium and other centers that have grown up around this initiative all based on collaboration. To read up more about Kortney’s short life, for event details, ways in which you can donate, please contact: Kristen Gillette • (732) 859-3629 Founder/Executive Director

kristen@thekortneyrosefoundation.org http://thekortneyrosefoundation.org HELP GET BRAIN TUMORS OFF KIDS MINDS!

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The Millstone Times

June 2018