Dad Is in Race Against Time to Save Teen Son and Thousands of Other Kids with Same Rare Brain Tumor

Fernando Goldsztein, an entrepreneur in Brazil, remembers when life felt ordinary. He and his wife, Nancy, were raising their two young sons, Frederico and Henrique, when everything shifted in 2015. Frederico was 9 when headaches and repeated bouts of vomiting began.

At first, doctors didn’t find a clear cause. But when Frederico developed double vision, the family finally got an answer: a malignant brain tumor called medulloblastoma.

“It’s very hard to put into words,” Fernando says. “We were terrified with the diagnosis. It’s kind of like the watch stopped and our lives froze, and then everything started from there.”

Medulloblastoma is rare but devastating. Roughly 500 children are diagnosed each year, according to estimates published in the Journal of Clinical Neuroscience, and it represents about 20% of all childhood brain tumors.

Fernando decided he couldn’t stand by—not just for his son, but for other families facing the same disease. In 2021, he launched the Medulloblastoma Initiative to raise funds, build awareness, and accelerate the search for a cure.

“This is my purpose,” he says. “This is my motivation. That’s how I spend my time nowadays.”

After the diagnosis, Frederico underwent surgery and then traveled to Boston for months of radiation therapy.

“My parents told me that I had a little ball in my head and it would have to have it removed,” says Frederico, now 19. “After that, there were 30 sessions of radiation and nine rounds of chemo. There were side effects. Nausea, vomit—and I could not feel the taste of the food. It was really tough.”

Fernando admits the treatment process was frightening, but he says his son’s determination never faded. “He faced everything with lots of courage,” he says.

Back in Brazil, Frederico continued regular follow-ups every three months. Then in 2019, the family learned the tumor had returned—bringing another round of radiation and chemotherapy.

The American Cancer Society notes that medulloblastoma recurs in about 30% of children, and that outcomes after recurrence are extremely poor because there are limited effective treatment options.

“A relapsed medulloblastoma is equal to a death sentence,” Fernando says. “The 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.”

Fernando wasn’t ready to accept that as the final word.

Through conversations and outreach, he connected with Dr. Roger Packer, a pediatric neurologist at the Children’s National Research Institute. That meeting, Fernando says, made one thing painfully clear: standard medulloblastoma treatments have changed little in years, with limited innovation.

After Fernando contributed funding to Packer’s work, a coalition of leading scientists in the field began to take shape. Soon after, Fernando launched MBI to scale that momentum—aiming, in his words, “to create something bigger and faster” and “to find the cure as fast as possible.”

To date, the organization has raised $13 million and supports 16 laboratories working collaboratively toward the same goal.

Fernando also says the organization now has two FDA-approved clinical trials: one designed to help a patient’s own cells recognize and destroy cancer cells, and another testing an mRNA vaccine intended to trigger a targeted immune response against tumors.

Frederico isn’t participating in those trials. Fernando explains that his son’s health has stabilized and MRIs currently show no detectable tumors, which makes him ineligible. But the uncertainty remains.

“He does not need this trial so far, but we know that his tumor will come back because it always does,” Fernando says.

For now, Frederico is moving forward. After graduating high school last year, he’s preparing to begin his first year of college.

Since launching MBI, Fernando has stayed in close touch with families around the world who are facing medulloblastoma. Many connect with him over Zoom and WhatsApp.

“They see us maybe as their only hope,” he says. “It’s very hard, but that gives me strength to work even harder.”

“I want to save Frederico,” he adds. “But now, it’s much bigger than him. We are talking about thousands of kids, and this is the purpose of my life.”