Medulloblastoma is an invasive tumor that occurs in the central nervous system. Although rare, it occurs with a higher incidence in children and young people, and is the most common type of childhood brain cancer.
Each year, 30,000 children are diagnosed with this disease worldwide. Among them, 10,000 will relapse following conventional treatment, which involves surgery, radiotherapy and chemo. Of these, 95% will not live for long and, among those who survive, the chance of serious sequelae is high.
Given this situation, one can imagine the apprehension and anxiety that seized Gaucho businessman Fernando Goldsztein, a member of Cyrela’s board, when, in 2015, he received the news that his son, then 9 years old, had this tumor.
In addition, it is a tumor that has not been studied much, and whose treatment has evolved little in recent years.
Fernando had no doubt: took the boy to the US.
“I was fortunate to be able to treat him in some of the best centers in the world,” the businessman told the Brazil Journal. “My son went through two cycles of therapies and today, at 16, he leads a practically normal life.”
In conversations with American doctors, Fernando discovered that, as it is a very rare tumor, with relatively few cases, medulloblastoma does not appear among the priorities of research centers. In the US, public and private funds end up being directed towards studies of other types of tumors.
Fernando decided that something had to be done to reverse this situation – and the way to do that was philanthropy.
With the technical help of the American doctor and researcher Roger Packer, vice president of the Center for Neuroscience and Behavioral Medicine and professor at the George Washington University, the businessman set up an international initiative to lead research whose ultimate goal is to find a cure for medulloblastoma .
Now, the Medulloblastoma Initiative, which was born in June 2021 from an initial donation of US$ 3 million by Fernando and his family, is already starting to reap results. In June, the first clinical trials of a new therapy will be carried out.
The initiative moved the pointer: it unlocked new research and attracted donors. “I never imagined it might have such a huge impact,” says Fernando.
From that start, the collaboration between 11 research laboratories in the USA, Canada and Germany was strengthened.
The advancement of research and testing, however, requires a greater volume of resources. To date, the initiative has received contributions approaching $8 million; the goal is to reach US$ 15 million in the coming months.
Packer, an expert in neuro-oncology, leads the consortium of scientists, which recently identified the likely mechanism of tumor development.
According to the study, published in Nature, medulloblastoma exists in a “premalignant form” when the baby is born. It develops during pregnancy, sooner than imagined. The discovery is a window to anticipate the fight once morest the tumor and prevent it.
An undesirable consequence of the treatment protocol used today is that radiotherapy and chemotherapy, given non-selectively, destroy not only cancer cells but also stem cells essential for children’s cognitive development.
The initiative plans to structure a research center in Brazil to participate in this international consortium.
Fernando, who two decades ago overcame chondrosarcoma – a malignant bone tumor in the pelvic region – says he will devote the rest of his life to philanthropic work in the fight once morest childhood cancer.
The businessman, whose family owned the real estate company Goldsztein – acquired by Cyrela in 2010 – seeks inspiration in a Talmud teaching: “He who saves a life saves the world.”
“Each one with their own budget, each one with their possibilities, needs to do something,” he says. “Choose a cause, a serious institution, but don’t wait to donate in 30 years. A small portion of your wealth can make a big difference in the lives of others.”
DONATE TO HELP SOMEONE’S CHILD: The Medulloblastoma Initiative
Giuliano Guandalini
