A San Luis Obispo group is working to educate local families about the link between toxic chemicals and cancer — and what steps parents can take to protect their kids.
End Kids Cancer aims to put an educational guide into the hands of families in San Luis Obispo County and north Santa Barbara County next year.
Founded by San Luis Obispo resident Frank Kalman in 2010, the nonprofit organization helps fund research on pediatric cancers and spread information about prevention.
The End Kids Cancer Prevention Guide is an abridged version of a book by Harvard physician Dr. Philip Landrigan and Mary Landrigan, “Children and Environmental Toxins: What Everyone Needs to Know.”
Philip Landrigan sits on the medical advisory board for End Kids Cancer and is the foremost expert on how toxic chemicals impact human health, particularly in infants and children.
Built on decades of research, the Landrigans’ book and the corresponding End Kids Cancer guide aims to help families and clinicians better understand the role environmental pollution and household contaminants play in child health outcomes.
“I’m surprised how many people don’t realize 80% to 90% of cancer is caused by the environment,” Kalman said.
Kalman and his colleagues with End Kids Cancer are working with market researchers and advertising experts to present the health information in a manner that is accessible and useful to families across demographics and socioeconomic groups.
“We want to try to get stuff out to families as soon as we can, because we don’t want to lose time,” Kalman said.
SLO parents work to end kids cancer
Kalman started End Kids Cancer in 2010 after his now-adult daughter, Calli Calvert, was diagnosed with a rare form of pediatric cancer called a neuroblastoma at age 12.
Seven months after their daughter underwent surgery to remove a tumor, “The doctors told us she wasn’t gonna make it,” Kalman said. “My wife and I went, ‘Bullshit. We’re going to find the guys that are going to save her.’ ”
After extensive research, Kalman discovered the pediatric neuroblastoma center at Memorial Sloan Kettering Hospital in Manhattan. He credits the top physicians in neuroblastoma with saving his daughter’s life, time and again.
Kalman shared what he learned while navigating the complexities of finding treatment for pediatric cancer in the U.S. healthcare system in a 27-page booklet called “Steps to Hope.”
“Steps to Hope” caught the attention of then-Vice President Joe Biden, who invited End Kids Cancer to the White House for a cancer moonshot summit in 2016.
Calvert is now 33 years old. She married her childhood sweetheart and lives in Templeton, sticking relatively close to her parents’ home in San Luis Obispo.
Kalman said his daughter’s journey has been brutal, with seven relapses — most recently in early 2022 — and five major surgeries, including a double mastectomy, to date, plus countless minor procedures.
“But she’s still with us,” Kalman said.
Robyn Letters of San Luis Obispo is working with End Kids Cancer to conduct market research for the cancer prevention guide. Her son Larry Letters died from a brain tumor at age 40 about four years ago after a 12-year-battle with cancer.
“One of Larry’s last wishes (was) he hoped that his journey would somehow have benefit to somebody else,” Letters said.
Larry Letters was diagnosed with brain cancer at 28 after experiencing a grand mal seizure at his mother’s San Luis Obispo home, just as his photography career was getting underway.
At the time of his diagnosis, doctors told Robyn Letters that the tumor had been growing in her son’s brain for 10 years or more, possibly beginning in his teenage years when he was a student at San Luis Obispo High School.
His doctors at UC San Francisco searched for a possible cause for his cancer but no known exposures could explain the brain tumor, Letters said.
When Kalman and Letters first connected about a year and a half ago, they didn’t know at first that they had both watched their children fight cancer.
Kalman was looking for a market research expert to help with focus groups for the cancer prevention guide, and Letters was searching for a way to honor Larry’s life.
At first, she considered placing a park bench in her son’s name in downtown San Luis Obispo or overlooking Pismo Beach.
“It seemed like a very good place to put my energy into this desire to do something in Larry’s name,” Letters said of working with End Kids Cancer. “Maybe this will be better than a park bench.”
Did pesticide exposure cause SLO County woman’s cancer?
Kalman got interested in the connection between environmental pollution and cancer two years ago.
While waiting for doctors at Memorial Sloan Kettering Hospital to call him and his daughter with the results of her latest scan, “It came to me that we’ve supported development of treatments, provided navigational guidance,” Kalman recalled. “I was thinking, ‘Look at the hell Calli and all the other kids have been through.’”
Doctors had told Kalman that they don’t know what caused Calvert’s neuroblastoma.
“So I started doing research on Google, and found out that there are three candidates that are possible causes of what she had,” Kalman said.
Kalman was surprised to learn scientists have long studied the associations between neuroblastoma, a cancer that typically appears in children under one year of age, and exposure to pesticides in the prenatal and perinatal stages of development.
He found articles showing how neuroblastoma was cropping up among families where mothers were living in homes that were fumigated with chlordane, a pesticide used to treat termites in homes.
Before Kalman and his family moved into their family home in 1988, the home was fumigated with chlordane. At the time of the fumigation, his wife was pregnant with Calvert.
“I remember the fumigator swore up and down that this was safe,” Kalman wrote in an email. “They’re all talking out of their rear ends.”
After a series of lawsuits linking exposure to chlordane with neuroblastoma and other conditions, the Environmental Protection Agency (EPA) banned all uses of the pesticide in 1988, according to the federal Centers of Disease Control and Prevention (CDC). The ban was initiated shortly after Kalman’s family was likely exposed to the pesticide.
There is no consensus as to whether or not chlordane is a carcinogenic substance, meaning cancer-causing, according to the CDC.
However, both the EPA and the International Agency for Research on Cancer consider chlordane to be a possible human carcinogen.
Although it’s impossible to know definitively if exposure to chlordane caused Calvert’s pediatric neuroblastoma, Kalman believes it to be a distinct possibility.
“Many people think that the government is doing a far greater job of protecting our children and they’re not,” Kalman said.
Government falls short of protecting families from toxins, experts say
Besides slow-walking the chlordane ban in the 1980s, Kalman said, the National Academy of Sciences Committee on Pesticides found in 1993 that regulators fall short of protecting children from pesticides and chemicals.
Landrigan chaired the committee, which presented the scientific basis for its recommendations that the EPA implement stronger regulations around pesticide use in food, according to an executive summary of Pesticides in the Diets of Infants and Children.
Despite these recommendations, nearly 30 years later, toxins are still appearing at unsafe levels in human food.
In February 2021, a White House report chronicled the alarming presence of arsenic, lead, cadmium and mercury contamination in baby food.
The lack of regulation of environmental and household toxins means families must prevent exposures through individual actions instead of relying on the protection of regulators, Kalman said.
“We can’t wait for the government. We have to do stuff now,” Kalman said. “For that reason, we’ve discovered a gap that’s not being addressed by our medical establishment.”
Kalman said if he knew about the linkages between pesticides and childhood cancer, he said he would have taken extra steps to limit his family’s exposure.
“This is information I wish we had known,” Kalman said of the material in the End Kids Cancer Prevention Guide.
Landrigan gave Kalman permission to use the material from his book “Children and Environmental Toxins” in the prevention guide and has provided feedback on the guide’s content. He also joined the End Kids Cancer medical advisory board, Kalman said.
SLO group turns to market research to direct cancer prevention guide
The material in the End Kids Cancer Prevention Guide is the result of nearly five decades of research conducted by Landrigan and other scientists about how exposure to toxic chemicals can impact children’s health, Kalman said.
“The major work is the research and that’s all been done,” he said.
The current draft of the guide features 52 science-based facts about possible contaminants previously discovered in tap water, food, households and the environment that have known associations with adverse health outcomes in children, such as pediatric cancer, asthma and cognitive disabilities.
Kalman, who has a background in business marketing, is drawing on his professional connections to help make the cancer prevention guide accessible to the families Kalman would benefit most from getting that information — including low-income families and those from diverse backgrounds.
Kalman reached out to the Honda advertising agency in Santa Monica, and copywriters agreed to rewrite the content in the cancer prevention guide so it is more accessible.
“We’re going to have them try to shorten it and direct it at the age group of … 16 to 35,” Kalman said. “We’re going to ask them to write it at that age group initially to use it as a baseline and then we’re going to reach out to these different segments of moms and expecting moms and utilize focus groups.”
Kalman connected with Letters to help organize focus groups of parents with children under 6 from various demographic and socioeconomic backgrounds, such as parents who identify as low- or middle-income, Black, Asian-American, Hispanic or Spanish-speaking families.
“We just can’t get enough of a feel about how that particular culture is going to respond to (the cancer prevention guide) unless we do it as a more homogeneous group and have a moderator who could speak the language or have some resemblance of the population we’re talking to,” Letters explained.
“The goal of that research will be to see what verbiage is the most effective in convincing parents to take steps,” Kalman said.
Letters said one of the biggest challenges is winnowing down the cancer prevention guide, because all the information in it is useful knowledge.
“The question is what’s most important and what are parents going to find most relevant,” Letters said. “So that’s what we’re trying to identify is how to take this whole big, vast group of statistics and data and information and boil it down into something that’s going to feel relevant to parents.”
“People need to have an understanding about why this matters and how they can incorporate it into their lives,” Letters said of the information in the guide.
How can nonprofit get guide to families that need it most?
Kalman would like to see the End Kids Cancer Prevention Guide in every household across the nation, though the group plans to start locally.
“We’re thinking of using San Luis Obispo and northern Santa Barbara County as our beta sites,” Kalman said. “And ultimately we’ll see if the ultimate goal is disease being reduced in those areas.”
Kalman hopes the guide will be finalized in 2023 and the team can begin distributing the laminated, legal-sized document on the Central Coast.
“Immediately there are going to be families benefiting from this information,” Kalman said.
Kalman said he plans to get the word out through End Kids Cancer’s partnerships with local physicians, hospitals and health agencies.
“We’ve had a front seat watching the horrible suffering and loss,” Kalman said. “Since we have been in this fight for nearly over two decades we’ve now discovered a huge gap and we’re doing something about it.”
To support End Kids Cancer, donate online at www.endkidscancer.org/donate. If you’re interested in participating in a focus group or learning more about the cancer prevention guide, email [email protected] or fill out a Google form at forms.gle/sgLoKFAAtKZZs9im9.
Sara Kassabian is a reporter at The San Luis Obispo Tribune, covering the North County and health news. Sara is from the East Bay Area and studied journalism at the University of Colorado Boulder. She received a master’s degree in global health at UC San Francisco, and has previously worked in health, science and tech communications. Follow Sara on Twitter @sarakassabian.
