Look Who’s Talking – Kathleen Ruddy, CEO, St. Baldrick’s Foundation
By Erica Shatzer
Within the time it took you to reach this page in this magazine, at least one child in this world received a life-altering cancer diagnosis. Actually, the sad reality is that a child is diagnosed with cancer every two minutes. This means, by the time you get to the back cover, more than a dozen children will have been diagnosed worldwide.
Childhood cancer does not discriminate; it effects all races, genders, and nationalities. However, on a national level, approximately one in 285 U.S. children will have cancer before they turn 20 years old, and one in five will not survive. The average diagnosis age for childhood cancers is six and, on average, the disease robs kids of 71 years of living. And unfortunately, more children are lost to cancer in the United States than any other disease, which may be due to the fact that the cancer typically has spread to other areas of the body before they are even diagnosed.
These sobering statistics bring to light the dire need for resolutions. Thankfully, one charity has stepped up to the plate to raise funds for cures and take childhood back from cancer.
About St. Baldrick’s The St. Baldrick’s Foundation, a 501 (c)(3) non-profit organization based in Monrovia, Calif., has been funding grants for childhood cancer research for 20 years, becoming the No. 1 private (non-government) funder of childhood research grants. Since its inception, St. Baldrick’s has supplied researchers with $282 million in funding through grants, enabling the nonprofit to be a part of every advancement in pediatric cancer throughout the past two decades.
St. Baldrick’s is a volunteer-driven charity, relying on tax-deductible donations from event sponsors, donors, and shavees, those who volunteer to shave their heads to stand in solidarity with children battling cancer and generate funds for the foundation. Typically, individuals, organizations, and companies, including MiniCo Insurance Agency, LLC, host shaving events to increase participation, secure donations, and raise awareness for the cause. Approximately 1,300 St. Baldrick’s shaving events take place each year in 30 countries across the globe.
“You don’t need to be a scientist to cure childhood cancer,” says Kathleen Ruddy, CEO of The St. Baldrick’s Foundation, noting that being a volunteer, a shavee, a sponsor, or an advocate helps the nonprofit fund the research necessary to find cures. “There are many roles and ways to contribute. And it all translates into lives saved!”
Once such life is forever ingrained into Ruddy’s mind, and she can’t retell the story without getting choked up. His name was Jeremy. At the time of the shaving event that Ruddy attended, he was only six years old. He was wearing a face mask to prevent catching any germs that could send his already weakened immune system into a tailspin. As the barbers lined up behind the shavees and turned on their clippers, Jeremy began to belly laugh. When Ruddy asked him why he was laughing, he gleefully replied, “This means I get to grow up!”
Lack Of Funding Everyone would likely agree that no child should ever have to worry about their own mortality. Regrettably, even with The St. Baldrick’s Foundation’s volunteers working hard to generate funding for childhood cancer research, a critical shortage of funding remains. Well above 90 percent of all dollars available for cancer research are dedicated to adult cancers, despite there being an equal number of children’s and adult cancers, and despite the fact that cancer is the No. 1 disease killer of children.
Pharmaceutical companies invest approximately one percent of their cancer research dollars in childhood cancer research because the resulting drugs and treatments are not profitable. Comparatively, nearly 60 percent of all funding for drug development in adult cancers comes from pharmaceutical companies. According to Ruddy, most new drugs for children with cancer are repurposed adult medications, which is oftentimes an inadequate solution. Because children are not simply little adults, drugs cannot be downsized. Researchers must realize that a child’s mind and body are still developing. Fortunately, she mentions that chemotherapy and bone marrow transplantation, now standards of adult care, were developed first for children. Therefore, it may be more beneficial for cancer patients of all ages for more money to be invested into pediatric cancer research.
“Many donors believe the modest contribution they can make won’t make a difference,” Ruddy says. “However, the foundation’s smallest grants are $5,000, so small donations quickly make an impact.”
Per The St. Baldrick’s Foundation’s website, “… there’s a big gap between the need for funding and the money available. At St. Baldrick’s alone, of the $27 million needed to fund every grant application that received an outstanding score in June 2019, only $17.5 million was available and granted.” Unlike other cancer foundations, St. Baldrick’s is able to use nearly two-thirds of every donation to fund grants and programs; the remainder is used to cover fundraising and administrative costs.
Research And Treatments Although additional funding is needed for ongoing research, St. Baldrick’s has certainly made a difference thus far. According to its research impact highlights, as of October 2019, the foundation had funded a total of 1,481 grants, “fueling an ongoing stream of research—from basic discovery to translational research, to clinical trials testing new treatments for patients.” The highlights also state that The St. Baldrick’s Foundation has supported “more than 249 clinical trials at more than 230 research institutions across Northern American and beyond through the Children’s Oncology Group.”
Some of the foundation’s biggest wins include:
Improving the survival of a form of acute lymphoblastic leukemia (PH+) from 20 percent to 70 percent with the FDA’s approval of Gleevec in 2013.
Increasing the survival of a form of acute lymphoblastic leukemia from 80 percent to 90 percent by using an old drug, Methotrexate, in a new way.
Increasing the survival of high-risk neuroblastoma from 30 percent to almost 50 percent with the FDA’s approval of Unituxin, a new immunotherapy.
Increasing the survival of high-risk non-Hodgkin lymphoma from 82 percent to 94 percent with Rituximab, a drug previously approved for adult cancers.
Saving the lives of more than 80 percent of relapsed childhood leukemia patients who had no other hope by obtaining the FDA’s approval of Kymriah, the first gene therapy approved in the U.S.
But none of the successes mentioned in this section would have been possible if The St. Baldrick’s Foundation hadn’t recognized the need for additional researchers in the pediatric oncology field. Ruddy states that several years ago, there were “not enough researchers due to a lack of funding. It’s hard to attract people to a field that has no funding,” she says. So, St. Baldrick’s started investing in grants that train doctors to become research scientists. The nonprofit has funded 134 “St. Baldrick’s Fellows,” those who needed funding to complete training to become pediatric oncology researcher, and 122 “St. Baldrick’s Scholars,” researchers who needed funding early in their careers to explore new ideas while establishing themselves for long-term success. The foundation’s efforts eliminated the shortage of researchers in the pediatric oncology field, and while that prevented a shortage of pediatric oncology research, Ruddy mentions that a research leader recently noted the situation has simply gone from “horrific to bad.”
More Progress To Be Made Indeed, progress is progress, but progress is not linear. There is still much work to be done, especially when survivors of childhood cancers are at risk for chronic health problems, fertility issues, and severe or life-threatening conditions from some of the treatments being used. For that reason, it is vital to fund research that is focused on preventing the lifelong damage that results from the surgeries, radiations, and chemotherapies administered to their developing bodies and minds, as well as data collection to understand the influences of these diseases through survivor analysis.
When all the pieces to the complex pediatric oncology puzzle are compiled, we can finally take back childhood from cancer!
How To Donate Here are a few ways to make tax-deductible donations to The St. Baldrick’s Foundation:
Visit the nonprofit’s website, www.StBaldricks.org, to explore various gift or volunteer opportunities.
Show your support at a shaving event. MiniCo Insurance Agency, LLC, is hosting its annual shaving event on April 4, 2020, at 3 p.m. at The Dubliner in Phoenix, Ariz. If you cannot attend in person, please consider making a donation by visiting www.stbaldricks.org/teams/MiniCo. See page # for additional details.
Consider choosing The St. Baldrick’s Foundation as the recipient of your upcoming Charity Storage Auction proceeds or select it as your charity of choice on Amazon Smile.