For parents of children with cancer, research is the light at the end of the tunnel. The research that was done prior to their child’s diagnosis, and will be done in the future, is the key to saving that child’s life. But before those parents ever heard the “Big C” word for the first time, they never gave research much thought.
Ellen and Sam Flannery know all too well the importance of research. When their daughter Shayna was five months old, she was diagnosed with retinoblastoma (cancer of the retina) in both eyes. If it hadn’t been for advances in research, she would have died. She went through treatment for the first two years of her life, survived her cancer and lost one eye to the disease. Today, she is a healthy young woman with a bright future. She is one of the lucky ones.
It was during Shayna’s treatments that Ellen and Sam discovered that childhood cancer research is severely underfunded – and with that knowledge they were driven to help children with cancer. In 2002, they founded CancerFree KIDS.
“We wanted to ensure that funding is made available to researchers who are working hard every day to find gentler treatments and a cure,” says Ellen. “You see, researchers need the ‘seed’ money to help get their innovative projects to the next step. Without that, they cannot apply for larger grants to move their ideas forward. This concept leverages the funding CancerFree KIDS provides many times over.”
To date, CancerFree KIDS has funded over $2 million in promising and innovative childhood cancer research, with 90 percent of the funds going directly to researchers at Cincinnati Children’s Hospital, and the other 10 percent is divided between Nationwide Children’s Hospital in Columbus, Ohio and the University of Miami Children’s Research Center in Miami, Florida.
“CancerFree KIDS follows the research projects we fund; we follow the results and come to know the researchers,” says Ellen. “By keeping the funding local/regional, we are able to show our donors the progress of their donations. We have a check presentation each year to meet the researchers we are funding and we invite our donors to meet them and hear about the promising research CancerFree KIDS fundraising dollars are supporting and bringing to reality.” One distinction about CancerFree KIDS is that they 100 percent of direct donations go directly to a research project. They also send out Donor Reports so that every donor knows the exact research project that their contribution helped fund.
Another unique aspect is that most of the funds donated locally stay local. “Cincinnati Children’s Hospital is one of the Top 3 pediatric cancer research hospitals in the country and we are proud to support the research that originates there,” says Ellen. “No other organization in the area does what CancerFree KIDS does – we provide the seed money to give innovative research a chance to get the data they need to leverage those dollars by applying for future grants – promising research that would go unfunded, and therefore untried, without our funding.”
Overall, CancerFree KIDS has made a huge impact by helping attract researchers to the prestigious Cincinnati Children’s Hospital. “The more funding that is available for childhood cancer research, the more accomplishments in research will be uncovered. Childhood cancer research also benefits adults with cancer.”
As for the most rewarding part of it all – that’s easy – they get to meet some pretty remarkable people.
“Some people have a personal connection to childhood cancer and want to make a difference, and others who have no connection at all but just can imagine it,” says Ellen. “It’s amazing the generosity that people are capable of, both in terms of their time and their donations. Some people don’t have the privilege of seeing that in people every day, but we do.”
Ellen says fundraising events – such as CancerFree KIDS’ annual Butterfly Walk and 5K — is a great way for the community to come out and support their cause. The Butterfly Walk and 5K takes place this Saturday, May 9 at Cottell Park in Deerfield Township. More info at www.butterflywalk.com.
“We believe that childhood cancer research should be a national priority and we work toward the day that our country will realize that it is unacceptable that more children die from cancer than ANY other disease, and yet the research receives less than four percent of the National Cancer Institute’s annual budget,” says Ellen. “Our kids deserve more than four percent.”