MBI is honored to be part of the 2026 edition, with our Founder and CEO, Fernando Goldsztein, named Advocacy Leader of the Year.

The recognition highlights Fernando’s work in bringing greater attention to pediatric brain cancer and strengthening the conversation around research, collaboration, and the need for better treatments for children with medulloblastoma.

It also brings greater visibility to a cause that remains urgent and to the work of the people, researchers, and organizations committed to changing the future of children affected by medulloblastoma.

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Fernando Goldsztein, Founder and CEO of MBI, was invited to participate as a panelist in the Health Working Session, sharing MBI’s perspective on how collaboration, urgency, and innovation can help accelerate medical research.

The event brought together leaders from different fields to discuss solutions to some of the world’s most urgent challenges. For MBI, it was a meaningful opportunity to bring pediatric brain cancer to a global stage and expand the conversation around the need for faster progress.

The participation reflects MBI’s commitment to bringing together people, resources, and ideas to accelerate research and advance the search for a cure for medulloblastoma.

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Recognized for its excellence in patient care, education, and research, Santa Casa becomes the first institution in Southern Brazil and the second in the country to join the initiative. Einstein Hospital Israelita was the first Brazilian institution to become an MBI Partner Institution, helping lay the foundation for stronger national and international scientific collaboration.

The collaboration aims to foster knowledge exchange, develop joint research projects, and create opportunities for participation in future clinical studies, strengthening the connection between Brazilian researchers and MBI’s international network in the search for new therapeutic strategies for medulloblastoma.

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The column highlights the importance of international scientific collaboration, sustained investment in research, and the pursuit of new therapeutic possibilities for patients diagnosed with the disease.

The publication helps raise awareness of medulloblastoma and reinforces the critical role of research in developing new paths toward treatment.

Read the full column on GZH.

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The Medulloblastoma Initiative (MBI) participated in the event with a presentation by our founder, Fernando Goldsztein. In addition to addressing relevant topics in the field, he highlighted MBI’s collaborative model, built on the integration of leadership, scientific excellence, and structured cooperation — an approach increasingly necessary to accelerate discoveries and improve research outcomes.

As the only speaker without a professional background in healthcare, Goldsztein contributed a strategic perspective to the discussions on how research initiatives can operate with greater coordination, efficiency, and impact.

We thank the event organizers for the opportunity to participate and for fostering such a qualified environment for scientific exchange and collective knowledge building.

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In this interview, Dr. Packer and Fernando show how connected science expands access, improves decision-making, and creates impact far beyond the laboratory.

Read the full story by clicking here.

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In the rare disease realm, the term “diagnostic odyssey” refers to the long, difficult process required to confirm a patient’s illness. Families must then endure the even more excruciating path to find an effective treatment.

For Brazilian businessman Fernando Goldzstein, that odyssey began on Nov. 7, 2015.

“We received this news that our son was diagnosed with a brain tumor, and at that time, our lives froze. It’s very difficult to put in words what a father or a mother feel in circumstances like this.”

Nine-year-old Frederico Goldzstein was diagnosed with medulloblastoma, the most common malignant brain cancer in children, and his father was determined to save his life. His journey toward an effective treatment led to a collaboration with Children’s National Hospital in Washington, D.C., and other research institutions, intended to speed up the research and diagnostic process. It also yielded the launch of the Medulloblastoma Initiative, an international organization that seeks cures for these rare cancers by supporting scientific research.

On November 18, Goldzstein spoke with NPF Rare Disease Reporting fellows about the need for more collaboration in the race to save the lives of children like Frederico. Here are some highlights from his session:

For rare disease parents, giving up is not an option

Goldzstein said that while his son’s treatment began in their hometown of Sao Paolo, it soon became clear that he’d have to travel to find answers. That’s because at one point, the tumor relapsed, and doctors in Boston told him there was nothing else to do but wait for Frederico to die.

Goldsztein rejected that advice. He began the arduous process of educating himself about his son’s condition and reaching out to the best research institutions in the U.S. He was directed to Dr. Roger Packer, Director of the Brain Tumor Institute at Children’s National Hospital. He recommended that Frederico participate in clinical trials in New York and Washington.

But for parents of children with brain cancer, hope can bring deeper anxiety.

“There is no scientific proof that things are going to work or not, so you are in unchartered waters. It might be toxic, you don’t know, but you don’t have options. So you have to do something or the tumor is going to move ahead until the patient dies.”

Frederico participated in the trials, even though they were not designed for his type of cancer.

“There was no trial specific for Frederico’s disease. I was hoping for the best, but I had to be prepared for the worst.”

Children with brain cancer need better treatments

Goldzstein said that in this age of biotech innovation, treatments for children with brain cancer have not kept pace.

“Believe it or not, the treatment is very old. It’s from the ’80s. The treatment is very toxic and ineffective because 30 percent, more or less, of the kids relapse. And if they relapse, there’s no cure. And you might think that, ‘well, we have 70 percent of the kids cured.’ Yes, we do. However, the treatments are very, very toxic and the kids suffer from collateral effects that affect their quality of life, like they don’t grow, or they have cognitive problems of even secondary tumors.”

The Medulloblastoma Initiative pushes clinical trials

The Medulloblastoma Initiative, founded in 2021, has been able to get two clinical trials approved in two and a half years – significant speed in a field where that process can take a decade. Goldzstein said that philanthropy and collaboration between 12 U.S. research institutions, one in Canada and one in Germany made it possible.

“When we started this, we didn’t know exactly where we are going to be in two years, four years. I would never imagine that MBI would be a global movement.”

The initiative also has a third and fourth trial in the pipeline, and some children whose tumors relapsed are also being treated.

Not everyone is as fortunate, but Frederico defied the dire odds he’d been given.

“He is a very smart guy. He likes to travel very much. He likes to read, he loves school as well. Fred has been a warrior, and I decided that fighting the pediatric brain tumor will be the goal of my life from now.”

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Originally published in: People Magazine.

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In the article, experts emphasize the scientific and social impact of bringing experimental therapies for pediatric brain tumors to Brazil, a milestone made possible by MBI’s collaborative model

The story also presents the journey of Fernando Goldsztein and his son Frederico, showing how a personal experience evolved into an international consortium that now brings together 16 leading institutions, has raised US$ 11 million, and allowed the record-time approval of two clinical trials by the FDA.

Among the approaches highlighted are personalized RNA vaccines and CAR-T cell therapies – technologies designed to activate the patient’s own immune system against the tumor and considered especially promising in cases of recurrence, when treatment options are more limited.

The article also reports on the signing of the consortium’s first agreement with a Brazilian institution: the Einstein Hospital Israelita, which now joins the MBI network through scientific collaboration, data sharing, and priority participation in future clinical trials.

This recognition reinforces the strength of a mission that began in Brazil and now mobilizes scientists, families, and donors around the world, all united by the same purpose: accelerating the development of new therapies for children who cannot wait.

Read the full story – clicking here

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