After Oded Grinstein’s daughter Shani was diagnosed with a very rare and aggressive type of sarcoma at just 9 months old, the Israeli parent struggled to find information about the cancer that threatened her life.

Shani endured dozens of chemotherapy cycles, radiation therapy and two surgeries. Thankfully, she is now a cancer-free, happy, healthy 10-year-old who loves to play soccer.

Following his family’s long struggle against childhood cancer, Grinstein founded MyChild’sCancer (MCC) in 2010, vowing to help other families who have just begun their fight.

MCC’s team of cancer experts, medical researchers and oncologists conduct personalized research into cancer type, treatment methodologies, new drugs, specialists, hospitals and emerging clinical trials. As family advocates, they conduct continual outreach to relevant national and international treatment centers, hospitals, doctors, nurses and insurance providers in order to ensure their families get the best care possible. If needed, MCC facilitates second options, joins families on medical visits, works with health-care providers, translates medical documents, negotiates medical bills and helps straightens out insurance issues.

“The issue we see is with widespread cancers, there is a lot of research and information, but for rare forms of cancer, it’s hard to find information online,” Michael Kasdan, MCC director of development, told JNS. “Our goal is to ensure that parents and caregivers are informed, supported and can focus on the needs of their child.”

Another one of the programs Grinstein developed, Wiki-Cancer, compiles information that cannot be easily found on Google. Using Wiki-Cancer, “parents from all over the world watch hour-long testimonials on a specific type of cancer treatment and approach us to ask for more information or to speak to another parent who has been through this,” explained Grinstein.

“This has led us to help children from India, Morocco, Europe, the United States, Honduras and more. This is our tikkun olam,” he added.

‘There’s no one smarter than the experienced’

The services provided, noted Grinstein, are all free of charge, though some are priceless.

“In 2019, information we brought altered the plans to amputate a 9-year-old child’s leg, altered the plan to do a disabling surgery in the spine of an 18-year-old and found treatment for a 2-year-old boy,” he said. “We source this information by putting together a team of researchers for each child and by leveraging a network of parents who have access to world-leading experts, which enables us to communicate with them directly, saving weeks of bureaucracy and sometimes thousands of dollars to the family.”

Most of the 40 to 50 families that MCC helps every year have been Israeli, learning of MCC by word of mouth. “If families have to travel or uproot themselves to find care—for example, from Israel to New York—we coordinate with the community in New York to make sure that the family is supported and has a Jewish community for the holidays,” said Kasdan.

Though Israel has “wonderful hospitals, a startup nation that prides itself in creative medical solutions, and most medical conditions can be treated in Israel,” noted Grinstein, with rare diseases—and pediatric cancers are all rare—“the experience in the United States is greater because of the size of the population.”

He referred to a saying in Hebrew, ‘There’s no one smarter than the experienced,’ maintaining that “if you’re a parent to a child with cancer, that experience could mean a lot.”

Grinstein attributed his desire to help others to his Israeli upbringing. “As an Israeli, since my youth, I always volunteered: delivering boxes with food during Pesach to low-income families, cycling with disabled people and more.”

“I also have the ‘entrepreneurship bug’ in me, and I work with Israeli technology and innovation,” he continued. “Combine these two, and you get a nonprofit with a unique offering, impacting children and families stricken with cancer.”