Alex's Lemonade Stand: How a 4-Year-Old's Legacy Is Bringing Researchers Together to Fight Childhood Cancer
September 3, 2014 | Inspiring Stories
By Lisa Wirthman
Although pediatric cancer research is making great strides, a funding shortage threatens further progress in this lifesaving field.
In one groundbreaking trial, researchers injected a young college student’s brain tumor with a form of the polio virus. Because she had previously received the polio vaccine, the girl’s body began to fight the tumor. Once the size of a lime, it’s now the size of a pea.
“When you hear a story like that, it sends chills up your spine,” said Jay Scott, co-executive director of Alex’s Lemonade Stand Foundation.
But scientific breakthroughs can occur only if medical research receives sufficient funding, a fact Scott’s daughter, Alexandra “Alex” Scott, recognized at the age of four. She started a lemonade stand on her front lawn 14 years ago, hoping to fund treatments for other young cancer patients like herself. “We teased her that she’d be giving $5 or $10 to find new treatments,” said Scott.
Instead, Alex raised $2,000, and sparked a nationwide movement and an opportunity to change the landscape of pediatric cancer research. She passed away in 2004 at the age of eight, but her legacy of working to find treatments and cures for all children fighting cancer continues with $80 million in donations funding over 450 research projects to date.
September is National Childhood Cancer Awareness month—a good time to recognize that even when combined, childhood cancers receive only 4 percent of federal funding for cancer research, as the National Cancer Institute reports. Yet, childhood cancer is the leading disease killer of children under the age of 15 in the United States.
Next month, Alex’s Lemonade Stand Foundation (ALSF) is teaming up with Northwestern Mutual to host its second Young Investigators Summit and inspire a new generation of pediatric cancer researchers to find treatments and cures in this vastly underfunded field.
“Anybody who can do the math can figure out that kids are getting shortchanged,” said Scott, who believes that cures for most kids can be found within five to ten years.
Nine in ten pediatric cancer researchers say lack of funding is the biggest obstacle to finding a cure, according to a survey by Northwestern Mutual. And nearly a fifth of researchers are considering leaving the field, primarily because of a lack of funds.
“That’s a real eye-opener,” said Scott. “We don’t want to lose a whole generation of potential cancer researchers.”
Northwestern Mutual first partnered with ALSF in July 2012 and since that date has contributed more than $6 million to fight childhood cancer and support families going through the disease.
“Beyond contributing funds, Northwestern Mutual’s efforts to engage employees and raise awareness of the cause make the nonprofit and corporate relationship unique,” said Scott. When nonprofits consider corporate partnerships, “It has to be a win-win,” he said. “If it’s a one-sided relationship, it’s not sustainable.”
“From a corporate view, partnership is the key to a successful social investment,” said John Kordsmeier, vice president for Strategic Philanthropy and Community Relations for Northwestern Mutual. “For people sincerely interested in making a difference, granting dollars is not enough, he said. “Being all in to bring about transformational change is the ticket.”
The Young Investigators Summit is designed to spark just such transformational change. Convening at the Children’s Hospital of Philadelphia, the summit brings together young scientists who have completed their fellowship training or are in the early stages of their research career. The summit offers them a forum to learn from world-class experts in the field, network with each other and collaborate on treatments and cures.
Last year about 30 pediatric cancer researchers attended the first Young Investigators Summit in Houston, which helped create a sense of community for scientists who are often secluded in their labs. “Some researchers working at the same institution in the same city didn’t know each other before the event,” said Kordsmeier.
For the second Young Investigators Summit next month, ALSF will give attendees a chance to meet some of the families helped by their research. “That’s the end goal,” said Scott. “Everything that we do has to have the potential to impact a kid with cancer.”
The research funded by ALSF is doing just that: In a recent clinical trial, a drug used to treat lung cancer in adults wiped out cancer in a group of children with lymphoma.
While the success stories are rewarding, pediatric cancer research still has a long way to go. Even children who are cured need more targeted therapies to prevent lifelong side effects such as a damaged heart or compromised kidneys. “We’re not going to get one magic bullet. We need a lot of very targeted bullets,” Scott said. “But we’re going to get there.”
And they’ll do it one glass of lemonade at time.
Learn more about Alex’s story. Her mother Liz Scott talks about her daughter in this video:
Lisa Wirthman writes about business, sustainability, public policy, and women’s issues. Her work has been published in The Atlantic.com, USA Today, U.S. News & World Report, Fast Company, Investor’s Business Daily, the Denver Post and the Denver Business Journal.
This article originally appeared on Northwestern Mutual Voice on Forbes.com.