Ellen Flannery: Fighting to End Pediatric Cancer

Written by Jennifer Hogan Redmond

Spotlight

Imagine learning that your five-month old daughter has cancer. Imagine watching your child suffer through painful treatments with no guarantee that she will be well again. Imagine discovering that most of the government funds being poured into cancer research are aimed at curing the disease in adults rather than in cancer's tiniest victims.

Unfortunately, this scenario is all too real for Ellen and Sam Flannery, founders of CancerFreeKids (CFK).When their infant daughter was diagnosed with retinoblastoma nearly 11 years ago, the Ohio couple joined more than 10,000 other U.S. families who annually face childhood cancer. (See National Cancer Institute.)

The road to health was far from easy but Shayna's battle was successful. She is now a healthy and happy sixth-grader with few memories of her illness. However, the journey she endured profoundly affected her family and left her mother with a clear mission to make a difference in the lives of other children with cancer.

Ellen's quest began with a question: "What's the stumbling block?" She wanted to know what is preventing researchers from finding a cure. The answer quickly became evident: Money. "I thought that was appalling," she says.

A Well-Planned Effort

Ellen searched for a way to help. "Certainly I never intended to start a nonprofit," she says matter-of-factly. "I thought I would volunteer, show up at a meeting or something," she recalls of her original plan to get involved in an organization close to her Cincinnati home. But in 1998, she found only one national organization and no local group focused primarily on childhood cancer.

So she embarked on her own to learn about fund raising for medical causes. Running a marathon for the Leukemia & Lymphoma Society, talking with researchers at medical centers throughout the country and working with other groups helped prepare her for what has become a tremendously successful--and evolving--venture.

In 2002, Ellen quit her job as marketing director for a law firm and started CancerFree Kids the same day. Her volunteer position as president and chairman of the board for the group is now more than a full-time job. But dedication and hard work is starting to pay off. In six years, the group has distributed $470,000 to fund pediatric cancer research.

Gaining Perspective

The Flannerys have definitely seen the advantages that come from embracing a cause together. Ellen admits that both of her children are mature for their ages. Having seen the ravages of cancer, "we know how fortunate we are," she states.

Shayna's older brother Max, 15, has acknowledged that he has the perspective of something outside himself. "When you see kids with cancer, you realize that what's going on in your life is not a big problem," his mother says.

"There's a constant thread running through everything we do," she adds. "Everything we do is focused on kids who have cancer."

In fact, it is not unusual for the family to have a packed weekend schedule that requires the children to attend multiple CFK events, often as workers selling tickets or distributing information. The siblings are accustomed to working together, juggling schedules and meeting goals. "It has been a huge blessing for our family to be this involved in a cause we are this passionate about," notes Ellen.

Looking Ahead

CancerFree Kids garners money for research from private donors, and through a variety of fund-raising events. And while the group has been successful thus far, Ellen admits that more work must be done.

She welcomes the help of those willing to volunteer in a number of ways. Touted as a "new breed of non-profit organization," CFK offers those who want to assist an "opportunity to go beyond writing the check." The group is focused on forming alliances with researchers and knowing what is happening in the field from a grass-roots level.

To expand the impact of its mission, CancerFree Kids has a five-year goal to move beyond Greater Cincinnati and partner with other groups to increase funding. "We want to take a more active approach to drive the research," Ellen says. The group is currently brainstorming unique fund-raising ideas that can be duplicated elsewhere in the U.S., she explains. "I'm impatient to raise more money."

CFK's website states that since each of us woke up this morning, 35 parents have been told that their child has cancer. To drive home the crushing impact of so many children being diagnosed with cancer each day, Ellen also asks, "Can you imagine if a plane crashed everyday? Wouldn't we be doing something to stop it?"

To find out more about CancerFree Kids, go to www.cancerfreekids.org.