“It’s very hard to put in words,” Fernando tells PEOPLE. “We were terrified with the diagnosis. It’s kind of like the watch stopped and our lives froze, and then everything started from there.\u201d<\/p>\n
About 500 children are diagnosed with medulloblastoma each year, according to estimates published in the\u00a0Journal of Clinical Neuroscience<\/a> \u2014 and it accounts for approximately 20% of all childhood brain tumors.<\/p>\n Determined to help his son and other kids around the world living with the same rare cancer, in 2021, he started the Medulloblastoma Initiative to raise money and awareness \u2014 and to find a cure.<\/p>\n \u201cThis is my purpose,\u201d he says. “This is my motivation. That’s how I spend my time nowadays.”<\/p>\n Goldsztein Family \/ The Medulloblastoma Initiative<\/p>\n Frederico Goldsztein<\/p>\n Following his initial diagnosis, Federico underwent surgery, later traveling to Boston for months of radiation treatments.<\/p>\n \u201cMy parents told me that I had a little ball in my head and it would have to have it removed,\u201d says Frederico, now 19. \u201cAfter that, there were 30 sessions of radiation and nine rounds of chemo. There were side effects. Nausea, vomit \u2014\u00a0and I could not feel the taste of the food. It was really tough.\u201d<\/p>\n Although his dad was terrified by the course of treatment, he said his son’s bravery never wavered. “He faced everything with lots of courage,” Fernando says.<\/p>\n Goldsztein Family \/ The Medulloblastoma Initiative<\/p>\n The Goldsztein family: Fernando and Nancy Goldsztein and sons Henrique and Frederico<\/p>\n The family later returned to Brazil where Frederico had medical follow-ups every three months. However, in 2019, the family learned that Frederico\u2019s tumor had come back, which led to more radiation and chemo treatments.<\/p>\n According to the American Cancer Society<\/a>, medulloblastoma recurs for about 30% of children, but their 5-year survival rate is “close to zero” as “with recurrence, there aren\u2019t any other effective treatment options.\u201d<\/p>\n \u201cA relapsed medulloblastoma is equal to a death sentence,\u201d the boy’s dad says. \u201cThe doctors in the U.S. told us that there might be something to do like a clinical trial, but the best option would be to go back to Brazil and for Frederico to be with the people that he likes.\u201d<\/p>\n Goldsztein Family \/ The Medulloblastoma Initiative<\/p>\n Frederico Goldsztein (sitting in chair) was diagnosed with medulloblastoma in 2015<\/p>\n But Fernando wasn’t ready to give up hope.<\/p>\n He started talking with more people, which brought him in contact with Dr. Roger Packer<\/a>, a pediatric neurologist with the Children\u2019s National Research Institute. From that meeting, Fernando discovered that the current treatments for medulloblastoma were outdated and had seen little innovation over the years.<\/p>\n A donation from Fernando to Packer led to the formation of a group of the best scientists in the field. Impressed, Fernando then started MBI “to create something bigger and faster” and “to find the cure as fast as possible.”<\/p>\n Since then, the organization has raised $13 million to date and oversees 16 laboratories working together on their shared goal.<\/p>\n Additionally, Fernando says that they have two clinical trials that were recently approved<\/a> by the FDA \u2014 one that attacks the tumor by allowing the patient’s own cells “to identify and destroy the cancer cells,” and the other that tests an mRNA vaccine that “generates a targeted immune response to destroy tumors.”<\/p>\n Goldsztein Family \/ The Medulloblastoma Initiative<\/p>\n Fernando and Nancy Goldsztein with their children Frederico and Henrique<\/p>\n Although Federico is not a part of the new trials \u2014 as his dad explains, Federico’s health has stabilized to the point where no tumors show up on MRI, which makes him ineligible to participate \u2014 he knows that they’re still in a race against time.<\/p>\n “He does not need this trial so far, but we know that his tumor will come back because it always does,” he says.<\/p>\n![\"Goldsztein](\"https:\/\/www.newsbeep.com\/us\/wp-content\/uploads\/2025\/12\/d887d52b3a6e6e82541b3fd1bd8a0035.jpeg\"\/)
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