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Unconditional love and the search for a cure for cancer

By Karina Pastore

Neofeed – 10/06/2024

After receiving the news that his son had cancer, Brazilian businessman Fernando Goldsztein created an innovative research model and, in record time, secured approval from the U.S. government to start two clinical trials.

Fernando does not say “if” a cure will be found for Frederico’s cancer, but rather “when”

“No, you have no idea.”

This is how Brazilian businessman Fernando Goldsztein always responds when someone, even in a gesture of sympathy, says they can imagine how he feels about his son’s cancer. “It’s not a very kind answer,” he admits in an interview with NeoFeed. But he is right. The pain and anguish are unimaginable. Only those who have experienced it know what it is like.

However, Fernando has never let this bring him down. He turned the fear of losing Frederico into action. In 2021, he founded The Medulloblastoma Initiative (MBI), an international organization supporting research into one of the most common childhood brain cancers. “I will only stop when a cure is found,” he says.

His paternal determination goes beyond mere hope. In less than 30 months, MBI obtained approval from the FDA, the stringent U.S. regulatory agency, to conduct two clinical trials focused on novel approaches for treating medulloblastoma recurrence – the first of their kind in humans.

With this approval in record time, the trials are set to begin in the coming weeks. One of them is an immunotherapy in which the patient’s immune cells are “programmed” to attack cancer cells, while a medication is used to disable the tumor’s chemical defenses.

The other line of research is focused on developing a vaccine that strengthens the patient’s immune system to prevent the recurrence of medulloblastoma.

In 1 and a half year, Fernando hopes to gain approval for three more clinical trials.

Each trial costs around $1 million, and MBI is responsible for financing the research. This is only possible thanks to an intense fundraising campaign launched by Fernando when the initiative began.

The first donation, of $3 million, came from the Goldsztein family. Since then, MBI has raised $10.3 million – and counting...

Among the roughly 50 donors are the Joseph Safra Foundation; entrepreneurs Antônio Luiz Seabra, founder of Natura; Carlos Jereissati, from the Iguatemi group; and Nelson Sirotsky, president of Maromar Investimentos and publisher at Grupo RBS.

Synergy and speed

Under the leadership of Dr. Roger Packer, from the National Children’s Hospital in Washington, who is Frederico's physician and one of the world’s leading experts in medulloblastoma, MBI supports a consortium of 14 laboratories: 11 in the U.S., 2 in Canada, and 1 in Germany. Soon, a new laboratory is expected to join from Israel.

“The researchers work synergistically, without duplicate efforts. There are no silos; they exchange information online," explains Fernando. “Each institution is doing its part of the puzzle.”

Recently, for example, a Canadian researcher managed to grow tumor cells in the lab. Samples were immediately sent to other researchers. This cooperation has been crucial for speeding up the studies.

With 25,000 new cases each year, medulloblastoma is one of the most common brain tumors in children. However, statistically, this tumor is considered rare, which is why it is not a priority for most research investors.

For instance, the standard treatment for medulloblastoma was established in the 1980s. Patients undergo surgery to remove the tumor, followed by intensive rounds of radiation and chemotherapy. Many children are left with lifelong side effects from these treatments, including cognitive impairment, hearing loss, memory problems, and infertility, among others. Worse still, in one-third of cases, the disease recurs.

That is what happened to Frederico. His first symptoms appeared in 2015 when he was 9 years old. An MRI revealed the cause of his headaches, vomiting, and double vision. On September 7, the diagnosis was confirmed – the worst day in the lives of Fernando and Bárbara.

Frederico underwent surgery in Porto Alegre and endured the difficult post-surgical treatment. In 2016, the family moved to the U.S., where Frederico was treated by Dr. Packer. However, when they returned to Brazil 3 years later, the cancer came back. Doctors told the family there was nothing more they could do.

But they did not give up. The family returned to the U.S., where Frederico participated in two clinical trials with experimental therapies. During that time, Fernando had the idea for MBI.

Frederico’s cancer came back again 3 years later, in 2022, requiring another surgery. Today, Frederico is 18 and cancer-free. “But if the cancer comes back, I want my son to have treatment, just like all the children around the world in the same situation,” says Fernando.

“Entire worlds”

Fernando’s background is in the construction business. In 2010, his family’s company, Goldsztein Participações, was acquired by Cyrela, a real state company, in which he has served on the board ever since. However, after that fateful September 7, his focus shifted to the fight against medulloblastoma.

He has become a spokesperson for at least 50 families worldwide – in Brazil, the U.S., Europe, Israel, and Iran, so far. MBI’s innovative model for medical research is starting to be replicated in other areas of oncology.

Fernando was invited to join the board of the National Children’s Hospital Foundation – "I’m the only non-American," he notes.

In April, he and Dr. Packer had the opportunity to speak about their cause at an event at the Brazilian embassy in Washington.

A month earlier, also in the U.S. capital, the project was presented to the Permanent Council of the Organization of American States (OAS).

Fernando himself was diagnosed with bone cancer in the early 2000s.

“Of course, hearing you have cancer is always difficult, but nothing, nothing compares to discovering that your child has cancer,” he reflects. “Children should not be allowed to have cancer.”

The MBI presentation video ends with a quote from the Talmud, the sacred Jewish text, which says: “Whoever saves one life, saves the world entire.” That is Fernando’s goal. Frederico’s father wants to save many “entire worlds.”

Read the full article (in portuguese) at: NEOFEED