How We Got Started
CancerFree KIDS aims to improve treatment methods for childhood cancer by funding innovative research projects in their early stages of development, allowing for continued progress for studies that show promising results.
"I was determined to do something..."
Something was wrong with the infant’s eye. When Ellen and Sam Flannery glanced down at their five-month-old daughter’s eye, it looked clouded white. When they covered up the “good eye,” their daughter shook her head, unable to see through the clouded eye.
The Flannerys took their daughter to the hospital, where doctors immediately determined the issue: retinoblastoma, a rare form of eye cancer that impacts 300 kids in the United States each year. Luckily, the tumors remained confined to the eye socket. Doctors informed the Flannerys that, if the cancer reached the brain, chances of survival plummeted. So, one week later, the Flannery’s daughter had her eyeball removed.
“We were one of the lucky ones,” Ellen said.
In the winter of 1998, the Flannerys began flying from Cincinnati to Philadelphia every three weeks for their daughter’s intensive cancer treatments. During these treatments, Ellen spoke with doctors and specialists about the slow progress toward curing childhood cancer.
“Through that experience of meeting doctors, I just started asking questions,” Ellen said. “Where are we with the war on cancer, and why aren’t we winning it?”
Doctors continued to give Ellen the same answer: it’s all about the money.
To Ellen’s surprise, childhood cancer research was drastically underfunded. The National Cancer Institute, a government agency that funds cancer research, dedicated 96 percent of its annual budget to research for adult cancer, leaving a mere four percent for childhood cancer research. Any additional funding for childhood cancer was going to have to come from somewhere else.
Ellen also learned that most big-money cancer research tends to focus on treatments that are almost guaranteed to work, giving donors a safe bet. These funds go toward treatments that already have ample data to support their success, treatments that focus mainly on adults. As a result, many cancer treatments used on children are not designed for children, which causes most childhood cancer survivors to develop lifelong illnesses from their treatment.
Even though many doctors and researchers had innovative ideas to treat and cure childhood cancer, few organizations funded these new projects that dared to think outside the box.
“Nobody is funding the research that’s taking risk, that's thinking of something new,” Ellen said. “A brand new idea that’s untried will never be tried unless someone gives them a little bit of money to get started.”
This information ignited Ellen’s determination to make cancer treatment gentler for kids and to ultimately eradicate childhood cancer. She wanted to raise money to directly fund pediatric cancer research, so she searched for organizations in the Cincinnati area that she could join. She wanted to conduct a fundraiser on behalf of a hospital, in which all donations would directly fund childhood cancer research. She found nothing.
So, Ellen decided to tackle the disparity in childhood cancer research in her own way by starting a nonprofit organization that became CancerFree KIDS.
Ellen started CancerFree KIDS with one simple purpose: to give money directly to researchers working on a cure for childhood cancer. She raised money through community events and individual donations with the goal of delivering a research grant to a researcher, helping them continue their innovative childhood cancer project in its early stage of development. She thought that, with a little startup funding, that researcher could prove that their concept worked. This money might allow the project to acquire more funding and develop into a breakthrough solution for eradicating childhood cancer.
“These researchers can’t get funding for a brand new idea that’s never been tried before,” Ellen said. “We’re often the very first grant that a researcher gets.”
Unsure if CancerFree KIDS could actually impact the landscape of pediatric cancer research, Ellen moved forward with her plan. After two years of fundraising, CancerFree KIDS raised $20,000. Ellen found two innovative researchers in the early stages of their project, awarding each researcher a $10,000 grant. One of those researchers ended up creating a start-up pharmaceutical company that conducts clinical trials for childhood cancer research.
“What if we hadn’t given him that grant?” Ellen said.
Ellen knew that innovative childhood cancer research needed data to acquire large grants, but getting that initial proof of concept data was difficult without funding. And that’s where CancerFree KIDS placed their focus: new research ideas with breakthrough potential that would otherwise go unfunded.
And the idea resonated with donors. CancerFree KIDS doubled their money each year, awarding more grants to more innovative researchers. Then, in 2020, CancerFree KIDS hit a milestone, raising $1 million in a year. They awarded $50,000 grants to 20 researchers. That also brought the organization’s total funding up to $7 million since its inception.
More importantly, that $7 million served as an investment with a high return; grant recipients have acquired $70 million in additional funding from other sources. All they needed was the startup funding from CancerFree KIDS to prove that their ideas had potential.
Now, CancerFree KIDS has the capacity to go even bigger. As a founding member of the Coalition Against Childhood Cancer, CancerFree KIDS partners with other pediatric cancer organizations across the country to advocate for improved childhood cancer research at the national level.
When Ellen advocates for improved legislation for childhood cancer, her daughter is right by her side, a cancer-free college graduate with 20/20 vision.
After more than two decades of dedicated work, CancerFree KIDS has awarded 173 research grants to researchers with bold ideas. Each year, CancerFree KIDS raises more money than the last, a direct testament to the generosity of a community that shares one common goal: to cure childhood cancer by funding innovative research.