Work inspired by 9-year-old Oceanport girl
By Carol Gorga Williams / Photos by Jaclyn Shugard
OCEANPORT – As 540 walkers and runner took their mark at a fun run at Kortney’s Challenge Sunday at Monmouth Park, the charity that bears her name, the Kortney Rose Foundation, celebrated 10 years of fundraising for what some supporters believe is the oft-neglected cause of research into pediatric brain tumors.
The charity was begun just five months after Kortney Rose Gillette of Oceanport died from an inoperable brain tumor by her mother, Kristen. She and her husband Rich and their daughter Kasey, and those may have been reasons enough but she wanted to accomplish more.
“At the time I started, I had no idea where it was going to go,” said Gillette whose foundation grew out of the Kortney Rose Care Foundation, a group of neighbors who helped the family as Kortney battled the tumor. But as Kristen Gillette’s knowledge of pediatric brain tumors grew, so did her determination to do something to help the research “especially after I heard the facts that so little is donated to brain cancer, especially brain tumors.”
Little by little, the foundation’s impact grew until this April it passed the $1 million mark, with all the money going to pediatric brain tumor research at the Children’s Hospital of Philadelphia (CHOP) where Kortney was treated.
“I’m still a little shocked,” confessed Gillette of the million-dollar-mark.
Sunday’s event raised some $64,000, substantially higher than last year’s total of $42,000.
“This year has been phenomenal in all aspects.”
Robin Hurd, 50, of Long Branch invited her good friend Sandra Williams, 48 of Long Branch to do the 2-mile Challenge. Hurd is a brain tumor survivor of 16 years, and talking about her experience as she waited to join the race brought tears to her eyes. “I’ve been wanting to do the walk for years, but I always had some excuse. But finally yesterday, I just felt like I needed to come.”
Elisabeth Maguire, 12, said she and her friend Elizabeth Norton, also 12, and both of Little Silver, wanted to be at Kortney’s Challenge because “You can get trophies. You feel so accomplished, and you feel like you did a good thing.”
Opal Lachcik, 8, of Shrewsbury said the race gave her a warm feeling. “We’re doing it for someone, and it feels special,” she said.
Participating in the Challenge is also a way for folks to honor someone who touched them. Hannah Duffy of Long Branch and Jeff Madonna of Red Bank ran to remember a Monmouth Regional student who died too soon. “It’s a great way to remember someone, and also bring attention to the need to raise money for brain tumor research,” said Madonna.
The money goes directly to CHOP, into two projects including the Children’s Brain Tumor Tissue Consortium in Neurosurgery, according to the foundation.
“She is just such an amazing inspiration and a powerhouse in her dedication,” said Jena V. Lilly, consortium project manager, said of Gillette. “It is her vision and being a true partner for the advancement of science. She is great friend and I am so grateful she is part of the program.”
The feeling is so mutual. So mutual in fact that Gillette is devoted to the cause.
“Sometimes because I work full-time and I do this, I don’t have a lot of time to myself,” she admitted although daughter Kasey is away at Montclair State, studying costume design so her mom’s guilt about home time is less.
“When it started, I needed to direct my upset into something positive,” she said. “It kind of saved my life having the foundation in the beginning. Now I cannot imagine not doing it.”
Others say Gillette’s work has made a difference beyond the dollars she has collected. Just last year, she was named a New Jersey Monthly “Seed of Hope” for her work in the community. She was instrumental as well in convincing the state Legislature to set aside May as Brain Tumor Awareness Month” in the state.
“She has been doing the work of bringing other people to the same space she is in,” said Adam Resnick, director of the consortium. “She and her foundation have been fantastic supporters. As a result of her support over the longterm, she has been a conduit….for (attracting) a network of like-minded people who provide a support system for each other but form a larger network…Her contribution far extends beyond the million dollars.”
It starts, he said, when patients’ families find the foundation on the web and begin the process of educating themselves about CHOP research efforts.
“Her authentic contribution far exceeds the million dollar number,” said Resnick who also serves as director of Neurosurgical Translational Research. “The million dollars is amazing but her value to our organization and what we are doing helps form collaborative efforts. That vision is what she is advocating for educating other families about what we are about.”
Getting the message out can help convince people of the importance of the issue and the work of the consortium, which is one of the country’s largest repositories for brain tumor tissue samples where any scientist with a research proposal is welcome as the experts work to unlock the mysteries of cancer.
“We are finally gaining momentum, they are coming to us,” Gillette said of sponsors and others. The foundation has a number of corporate sponsors and she is grateful for support, large and small. The foundation reached $1 million over time and with the help of nickels from school children, a program called Kortney’s Coins.
“I think initially it started as an Oceanport thing,” Gillette said of the small Monmouth County community the family calls home. “My intention was to expand out of Oceanport” and sponsors like Monmouth Park and the Turning Point help do that because they have a wider reach.
Turning Point Restaurants earlier this year raised more than $51,000 for the foundation. But more than that, said Gillette, it enhanced the foundation’s visibility,” Gillette said. “That is my No. 1 thing. There are plenty of other people saying that. It is not just me being that good,” she said.
