The chances of curing medulloblastoma are 65%, but Frederico joined the other 35% statistics and saw the disease return in 2019, this time with metastasis, when the diseased cells spread to other parts of the body. With no other options, the boy began participating in clinical trials in the US, but they were not specifically aimed at this type of cancer – and they proved ineffective. “In 2021, I contacted a doctor from Washington named Roger Packer, one of the world’s leading authorities on childhood brain tumors. I said: Doctor Packer, I want to do something, I want science to move forward”, says Goldsztein. “Children with brain tumors have been left behind by society.”

Despite the large number of children diagnosed with medulloblastoma each year, when each of these lives is taken into account, the condition is considered rare. Eduardo Ribas, a neurosurgeon at the Hospital Israelita Albert Einstein, analyzes the scenario: “In Brazil, we do not have the best epidemiology of this disease, that is, data collection on the percentage of patients, their race, their age…”. According to the doctor, surgery will always be necessary for treatment. Then comes radiotherapy, except for children under 3 years old, followed by chemotherapy. “When thinking about the future, chemotherapy should be the area that will evolve the most, with the development of molecularly targeted drugs, but everything is still very recent.”

Feeling that it was time to change the scenario, Goldsztein decided to invest US$ 3 million of his own in an idea: to set up a project with scientists who, headed by Packer, could research new treatments. What began with four laboratories (three in the US and one in Canada) has expanded, and now there are thirteen in North America, one in Germany and the possibility of opening the 15th study center in Israel.

The positive results began to emerge and energized the businessman, who structured the Medulloblastoma Initiative (MBI), an organization that raises money from private supporters to invest in research at the Children’s National Hospital in Washington, which is responsible for coordinating the laboratories and distributing the investments. “These scientists work cooperatively. So, one part tests new drugs or those that are already used in other tumors; the other thinks about immunotherapy treatments. The beauty is that this group works completely in synergy”, says the founder.

The results achieved in just over three years give hope to the collective. In 2024, two clinical trials were approved by the FDA, the United States regulatory agency, for new stages. One of them consists of the study called “Matchpoint”, which tested a new immunotherapy in six patients with recurrence, in Florida. The treatment, less toxic than those currently available, showed promise by almost completely eliminating the disease in a patient with widespread metastasis.

The other approval came for testing an RNA vaccine, which uses tumor cells from the patient himself to create a personalized vaccine and relies on nanotechnology to build a unique distribution mechanism. The combination promises to reprogram the immune system to attack cancer. The trials are expected to begin in the first half of next year. There are also three other treatments with research underway that will possibly be submitted to the FDA in twelve to eighteen months.

“I see families paying tribute to their lost loved ones, and I don’t want that. I want to save my son. And, obviously, today the project has become much bigger than that. Thousands of children have benefited, but that was the initial impulse. So, we bring a sense of urgency. When we have the opportunity to talk to scientists, we tell them: this is not a tribute to someone, we want to solve the problem now”, says Goldsztein.

Frederico continued with the treatments and has just turned 18. He is leading a normal life, with stable health. His story and that of his father’s initiative have traveled the world and reached more people who are going through similar situations with medulloblastoma. The businessman says that, through MBI, he keeps in touch with around sixty families in several countries, such as Belgium, England and Iran. “I talk to all of them, I schedule a video call to meet them one by one. Of course, I don’t give medical advice, but they want to know about the project, when there will be treatment… ” They are then referred to Packer’s team.

On the day of the interview with GQ Brazil, Goldsztein had just gotten off one of these calls. It was possible to sense the sadness he feels when he hears about these cases. Many times, the family just wants to vent, tell their story, and he is there to listen. “There are situations that have no way out, they are extreme. It is very hard. In a way, every time I talk to these people, it gives me more strength to continue, because I think: “it is not possible.”

This encourages me to serve as an example for others, if they have the means, to do what I did for other diseases,” he says.

To date, R$58 million has been raised to get the project off the ground. Most of the supporters are individuals, mainly Brazilian businesspeople, but MBI’s recognition has begun to spread throughout the United States. The goal is to obtain more donations there, where the culture of philanthropy is more widespread. For Goldsztein, raising awareness about this disease, and so many others that have been overlooked, is essential for more people to take action in favor of something important for society.

That’s why he likes to recall a speech he gave in 2023 during the presentation of his project at the Massachusetts Institute of Technology (MIT), where he is a former student: “I said that we were at a business school, but that I wanted to get the message across that life isn’t just about accumulating, accumulating, accumulating. For those who can’t donate money, they can donate their time, a hug,” he says. “Businesspeople, people who accumulate much more than the next generations will need… for me, it doesn’t make sense. And I’m not saying this to receive donations for the MBI. I’m talking about people choosing a serious cause and donating to it. I used to do very little myself. After this shakeup I received from life, everything changed. Everyone must do their part in the world.”

“I see families paying tribute to their lost loved ones, and I don’t want that. I want to save my son. And today, the project has become much bigger than him.”