Unconditional love and the search for a cure for cancer
By Karina Pastore
Neofeed – 06/10/2024
After learning that his son had cancer, Rio Grande do Sul businessman Fernando Goldsztein created an innovative research model and, in record time, obtained approval from the American government to begin two clinical trials.
Fernando doesn’t say “if” he finds a cure for Frederico’s cancer, but rather “when”
“No, you can’t imagine.”
This is how Rio Grande do Sul businessman Fernando Goldsztein reacts whenever someone, even in a gesture of solidarity, says they imagine how he feels about his son’s cancer. “It’s not a very nice answer,” he admits in a conversation with NeoFeed. But he’s right. This pain and anguish are unimaginable. Only those who live them – or have lived them – know them.
However, Fernando never let himself be discouraged. He turned his fear of losing Frederico into action. In 2021, he founded the Medulloblastoma Initiative (MBI), an international organization that supports research into one of the most common brain tumors in childhood. “I’ll only stop when a cure is found,” he says.
The father’s determination goes beyond hope. In less than 30 months, MBI obtained approval from the FDA, the strict American regulatory agency, to conduct two clinical trials focused on new approaches to treating medulloblastoma recurrence – the first of their kind in humans.
With approval in record time, tests should begin in the coming weeks. One of them is an immunotherapy: the patient’s defense cells are “programmed” to attack cancer cells, while a drug deactivates the tumor’s chemical protections.
The other line of research investigates the creation of a vaccine capable of strengthening the immune system of patients against the reappearance of medulloblastoma.
In a year and a half, Fernando expects approval for three more clinical trials.
At a cost of around US$ 1 million each, MBI is responsible for financing the research. And this is only possible thanks to an intense fundraising campaign, launched by Fernando, at the launch of the initiative.
The first contribution, of US$ 3 million, came from the Goldsztein family. Since then, the organization has raised US$ 10.3 million. And counting…
Among the approximately 50 donors are, for example, the Joseph Safra Foundation; and the businessmen Antônio Luiz Seabra, founder of Natura; Carlos Jereissati, from the Iguatemi group; and Nelson Sirotsky, president of Maromar Investimentos and publisher of the RBS group.
Synergy and speed
Under the leadership of American Roger Packer, from the National Children’s Hospital in Washington, Frederico’s doctor and one of the world’s leading experts on medulloblastoma, the MBI comprises a consortium of 14 research institutions – 11 in the United States, two in Canada and one in Germany. A 15th research center in Israel is expected to join the group soon.
“The researchers work synergistically, without duplication of action. There are no silos; they exchange information online,” explains Fernando. “Each institution does its part in the puzzle.”
Recently, for example, a Canadian researcher managed to develop some tumor cells in the laboratory. Samples were immediately sent to the other researchers. This cooperation has proven to be essential for the speed of studies.
With 25,000 new cases per year, despite being one of the most common brain tumors among children, statistically, medulloblastoma is considered rare. For this reason, it is not a priority for those investing in research.
To give you an idea, the standard treatment was established in the 1980s. Patients undergo surgery to remove the tumor and then undergo intensive radiotherapy and chemotherapy. Many children suffer from the after-effects of the procedures for the rest of their lives, such as cognitive impairment, hearing loss, memory problems and infertility, among others. And, worse still: in one third of cases, the disease recurs.
That’s how it was with Frederico. The first symptoms appeared in 2015, when the boy was 9 years old. The cause of the headaches, vomiting and double vision was found in the images from an MRI. The diagnosis was confirmed on September 7th. It was the worst day of Fernando and Bárbara’s lives.
Frederico underwent surgery in Porto Alegre and faced the harsh post-surgery treatment. In 2016, the family moved to the United States and the boy began to be monitored by Dr. Packer. However, three years later, back in Brazil, the cancer returned. There was nothing more to be done, they told the boy’s parents.
No one gave up. The family returned to the United States. There, Frederico participated in two clinical trials with experimental therapies. At that time, Fernando had the idea for MBI.
Three more years, in 2022, another relapse and a new operation. Today, Frederico is 18 years old and free of the disease. “But if the cancer comes back, I want my son to have treatment, just like all the children who are in the same situation around the world,” says his father.
“Whole worlds”
Fernando comes from the construction industry. In 2010, the family company, Goldsztein Participações, was purchased by Cyrela – on whose board of directors he has been a member ever since. Since that September 7th, however, the businessman’s focus has been on the fight against medulloblastoma. He has become a sort of spokesperson for at least 50 families around the world – Brazil, the United States, Europe, Israel and Iran, for now…. MBI’s innovative medical research model is starting to be replicated, including in other areas of oncology.
The businessman was invited to join the board of the National Children’s Hospital foundation – “I’m the only non-American,” he says. In April, he and Packer had the opportunity to talk about the cause’s objectives at an event at the Brazilian embassy in Washington. The previous month, also in the American capital, the project’s history was presented to the Permanent Council of the Organization of American States (OAS). The businessman himself was a victim of a bone tumor, diagnosed in the early 2000s.
“Obviously, the news that you have cancer is always hard, but nothing, nothing compares to finding out that your child has cancer,” he recalls. “Cancer should be banned in children.”
The MBI presentation video ends with a phrase from the Thamuld, the Jewish holy book: “Whoever saves one life saves the whole world.” That is Fernando’s purpose. Frederico’s father wants to save many “whole worlds.”
