“Something is wrong with the baby's eye...” ​

It was Christmas Eve when Ellen and Sam Flannery glanced down at their five-month-old daughter and noticed that something about her right eye looked odd. Instead of being black in the center, it looked white.  

Not knowing what the problem could be, they took her to the doctor the next day, who sent them to Cincinnati Children's Hospital.  The doctors there immediately determined the issue: retinoblastoma, a rare form of eye cancer, not only in her right eye, but in both. They also said that, if the cancer reached the brain, chances of her survival plummeted. On New Year’s Day she had her right eye removed. 

“We were one of the lucky ones” 

The Flannerys began flying from Cincinnati to Philadelphia every three weeks for intensive treatments for her left eye – to save her vision and her life. After two years she was declared “cancer-free” and is now a healthy young adult with 20/20 vision in her remaining eye.   

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During these treatments, the Flannerys were meeting lots of doctors and specialists, so they began asking questions, like “Where are we with the war on cancer, and why aren’t we winning it?” and “Why are the chemotherapy drugs used to treat my daughter the same drugs that we have been using in children since the 1950’s? “ 

Their answers were consistent: there's not enough funding for research.

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The Flannerys were shocked to learn that childhood cancer research is drastically and consistently underfunded. The National Cancer Institute, the government agency that funds cancer research, dedicates 96 percent of its annual budget to research for adult cancers. leaving a mere four percent for research on childhood cancers. But children are not just small adults – they get different types of cancer, and their bodies react differently to drugs. As a result, even if they are effective at getting rid of the cancer, most childhood cancer survivors suffer life-altering damage and even death caused by their treatment.

 

The sad truth: No one is doing anything about this. There isn't a lack of ideas, just a lack of funding to try them. Funding on childhood cancers is not profitable.

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The conclusion: Any additional funding for childhood cancer was going to have to come from somewhere else.

 

 This realization ignited Ellen’s determination to find a way to make cancer treatment gentler and more effective for kids. But where would the money come from?  

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After unsuccessfully searching for a nonprofit organization that was raising funds for pediatric cancer research, Ellen decided she would have to do it herself.  

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She started CancerFree KIDS with one purpose: to give money directly to researchers with new ideas for a cure for childhood cancer. The idea was simple: with a little startup money, a researcher with a new idea could prove that their idea might work, and with this data they could attract more funding from other sources.  And that’s exactly what happened. But it took a while.  

 

"What if we hadn't given them that grant?"

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Unsure if CancerFree KIDS could actually impact the landscape of pediatric cancer research, they moved ahead with fundraising. That first year, CancerFree KIDS had $20,000 to give away. They found two innovative researchers with ideas they wanted to try and gave each a $10,000 grant. Both projects are ongoing to this day; both having attracted many millions in subsequent funding. Scientific publications, patents, and clinical trials. One of them led to the creation of a start-up pharmaceutical company that is working toward a new treatment.

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The idea resonated with donors who have supported us since the beginning. CancerFree KIDS continues to fund more promising research each year, investing in the most promising new ideas at two of the top pediatric cancer research hospitals in the country: Cincinnati Children’s Hospital and Nationwide Children's Hospital in Columbus, Ohio.

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Inspired by the children and families who have battled this disease, CancerFree KIDS has plans to go even bigger – funding more research and being a leader in the pediatric cancer space. As a founding member of the Coalition Against Childhood Cancer, CancerFree KIDS partners with other pediatric cancer organizations to collaborate and advocate for legislation that will accelerate childhood cancer research on a national level.  

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When Ellen advocates for improved legislation for childhood cancer, her daughter is right by her side.

After more than two decades of dedicated work, CancerFree KIDS has awarded 265 research grants totaling $12.5 million to researchers with bold ideas which has translated into more than $125 million in subsequent funding.

 

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 give every kid a chance to grow up.