"The bottom line is pediatric cancers have problems because the pharmaceutical companies are less likely to support non-federally sponsored research in adults," he told ABCNews.com.
"If you do successful studies in lung, breast, colon cancer or melanoma, you sell gazillions of dollars in drugs," Friedman said. "But in successful trials in rare pediatric cancers, it's very difficult to anticipate a profit. And if you make a mistake and kill a kid, it stops the whole process."
Desserich said he hopes that his foundation can force scientists to think about new methods and "not the same old dinosaur drug therapies."
Parents of dying children are more willing to take risks, he said, and children are better able to sustain difficult cancer treatments, ones that could lead to cures in all cancers, even adult ones.
"We are not just another cancer charity," said Desserich. "We have tried to cure cancer for 70 years, but this may offer us a chance to make a large leap."
Dedicated to the research that they believe will make such a difference, the Desserich family allowed doctors to perform an autopsy on Elena's body. They have buried her ashes under the scarlet maple tree she picked out before her cancer.
"The tree was scrawny, but it was also cheap," wrote Desserich in the final pages of "Notes Left Behind." "So we bought it, never expecting it to thrive or flourish. Three years later, it's the strongest tree in the yard and also the prettiest."
Click here to view the Agins' journal, Caring Bridge.