St. Jude’s Children’s Hospital estimates around 400,000 kids around the world will be diagnosed with cancer this year. In the U.S., research and treatments have helped increase survival rates. 80% of kids live five years or more with treatment, but a lot of work is being done to improve that statistic and find cures for more rare forms of cancer.
"Kids with brain tumors were left behind. Because the treatments are very old, they are from the 80s, believe it or not," Fernando Goldsztein said.
Fernando’s son, Frederico, was diagnosed with a brain tumor when he was nine years old. Medulloblastoma is the most common brain tumor in children, but it is still rare. Just five out of one million kids are diagnosed with the disease each year, which has made finding funding for new research difficult.
"Unfortunately, he relapsed," Fernando said. "I was told by the doctors back then that there was nothing to do to save my son, that I should go back to home and spend time with him."
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The five-year survival rate for medulloblastoma patients is more than 80%. But if the disease comes back, the five-year survival rate drops to less than 40%.
"When I received that devastating news five years ago, after two weeks, I kind of recovered, you never recover, right? But I kind of recovered and I said, ‘I’ve got to do something, I will do something,'" Fernando said.
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Fernando has made it his mission to find a cure for Frederico, who is still dealing with recurrent medulloblastoma at the age of 18. Two years after Frederico’s cancer returned, Fernando launched the Medulloblastoma Initiative, or MBI, alongside Dr. Roger Packer, one of the world’s leading Medulloblastoma researchers at Children’s National Hospital in Washington, D.C.
"We are trying to find a cure for this disease as soon as possible. So, it's a model that brings together the best minds in the field," Fernando said. "MBI is all about collaboration and synergy. The scientists, to be funded by us, they have to work as a group."
The initiative has brought together more than a dozen labs from around the world.
"By each one having each piece of the puzzle, we were able to move very fast and are achieving very interesting results," Fernando said.
Since Fox last spoke with MBI, the group has helped fast-track at least two clinical trials at the University of Florida for medulloblastoma and several other studies are in the works.
"We have much more in our pipeline," Fernando said. "We are excited with these results."
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In a clinical trial funded by MBI, scientists are programming patients’ white blood cells to seek and destroy tumor cells. The results have been promising, and one participant’s cancer was nearly eliminated.
In a separate study still being tested on mice, scientists at the University of Florida are researching an experimental mRNA-based cancer vaccine. The study could lead to a universal shot that helps jump-start a patient’s immune system when fighting cancer.
100% of the donations given to MBI go to supporting research and clinical trials to help kids like Frederico. Fernando says his son is doing well thanks to much of the new research being done.
"He is an outlier, but we know that this type of tumor comes back, so it's running against time. And that's why we are moving fast to save him and to save thousands of other kids out there," Fernando said.
You can learn more or donate to the Medulloblastoma Initiative at https://mbinitiative.org/.
