The chances of a cure for medulloblastoma are 65%, but in 2019, Frederico became part of the remaining 35% in whom the disease recurs—this time with metastasis, as the cancerous cells spread to other parts of the body. Running out of options, Frederico was enrolled in clinical trials in the USA, but as these were not specific to his cancer type, they were ineffective. “In 2021, I contacted a doctor named Roger Packer in Washington, one of the world’s leading experts in childhood brain tumors. I told him, ‘Dr. Packer, I want to help. 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 every year, when each life is considered individually, the condition is considered rare. Eduardo Ribas, a neurosurgeon at Hospital Israelita Albert Einstein in São Paulo, explains: “Data on the epidemiology of medulloblastoma in Brazil, such as the number, race, and age of affected patients, is limited.” According to Dr. Ribas, surgery is always necessary, followed by radiotherapy (except in children under 3), and then chemotherapy. “In the future, chemotherapy is likely to advance the most with the development of molecularly targeted drugs, but this is all still very recent.”

Determined to change the landscape, Goldsztein invested $3 million of his own money to launch a research project in which scientists, led by Dr. Packer, could investigate new treatments. Initially involving 4 laboratories (3 in the USA and 1 in Canada), the project has now expanded to 13 laboratories in North America, 1 in Germany, and plans to open a 15th in Israel.

As positive results started coming in, Goldsztein was further motivated to create The Medulloblastoma Initiative (MBI). The MBI channels private donations into research at Children’s National Hospital in Washington, which coordinates the laboratories and allocates funding. “These scientists work cooperatively. Some test new or repurposed drugs, others explore immunotherapy treatments. The beauty is that the group operates in complete synergy,” says Goldsztein.

Just over 3 years into the project, hopeful results are emerging. In 2024, two clinical trials were approved by the FDA for further stages. One is called “Matchpoint,” which tested a new immunotherapy on 6 relapsed patients in Florida. The treatment is less toxic than those currently available and showed promise by nearly eliminating the disease in a patient with widespread metastasis.

The second approval was for testing an RNA vaccine that uses the patient’s own tumor cells to create a personalized vaccine, using nanotechnology to build a unique delivery mechanism. This combination promises to reprogram the patient’s immune system to attack the cancer. Clinical trials are expected to begin in the first half of 2025. Additionally, 3 other treatments are under investigation and may be submitted to the FDA within the next 12 to 18 months.

“I see families making tributes to lost loved ones, but I don’t want that. I want to save my son. And, of course, the project has grown far beyond him. Thousands of children will benefit, but the initial drive was personal. This is urgent. When we speak with scientists, we tell them: this isn’t a memorial, we want a solution now,” says Goldsztein.

Frederico continued treatment and has recently turned 18, living a normal life with stable health. His story and his father’s initiative have reached other people around the world who are facing similar battles with medulloblastoma. Through MBI, Goldsztein remains in touch with about 60 families in countries such as Belgium, England, and Iran. “I talk to all of them, setting up video calls to get to know each family. I don’t give medical advice, of course, but they want to know about the project and when treatments may become available,” he shares. . . Afterwards, they are referred to Packer’s team.

On the day of his interview with GQ Brazil, Goldsztein had just finished one of these calls. The sadness he feels when he hears about these cases is noticeable. Many families simply need someone to listen, to hear their stories, and he is there for them. “Some cases have no options left; they’re extreme. It’s very hard. Every time I speak with these families, it gives me more strength to continue. I think, ‘This can’t be it.’ It motivates me to set an example for others with the means to do the same for other diseases,” he reflects.

To date, MBI has raised $58 million to support its activities, with most donations coming from individuals, especially Brazilian businesspeople, although MBI is becoming increasingly recognized in the United States. The goal is to attract more donations there, where philanthropy is more culturally ingrained. For Goldsztein, raising awareness about this and other rare diseases is essential to rally people for a meaningful cause.

This conviction underscores one of his key messages during a 2023 presentation at MIT, where he studied: “I said that although we were in a business school, I wanted to share the message that life isn’t only about accumulating wealth. Those who can’t give financially can give their time, a hug,” he recalls. There are people accumulating far more than future generations will ever need—to me, it just doesn’t make sense. And I’m not saying this to get donations for MBI. I’m saying people should choose a serious cause and donate to it. I myself used to do very little. But after this wake-up call from life, everything changed. We all need to do our part in the world.”

“I see families making tributes to lost loved ones, but I don’t want that. I want to save my son. And today, the project has grown far beyond him. ”