In charge of The Medulloblastoma Initiative, the entrepreneur from Rio Grande do Sul leads a task force to find a cure for one of the most common types of cancer in children in the world
“Children should never have cancer.” If a plebiscite were created to assess changes in the rules of life, the above proposal would have Fernando Goldsztein as its greatest advocate. After all, it is the most repeated phrase by the entrepreneur. A lament that became his motto and purpose.
With a degree in Business Administration from PUCRS, Goldsztein is a partner of Cyrela, one of the main construction companies in the country. Today, however, the title that most represents him is founder of The Medulloblastoma Initiative (MBI). The organization is dedicated to raising funds for the treatment of medulloblastoma, the most common type of brain cancer in children.
In 2015, his son was diagnosed with the disease at age 9. Goldsztein then began a tough relationship with Frederico’s illness, marked by hope and great amounts of empathy. “Only those who go through something like this can really understand. Life is our most priceless gift. And the life of your child is even more precious,” he says. In fact, cancer wasn’t news to him. In 2005, Goldsztein travelled to Houston (USA) to treat a bone tumor. It worked. The disease disappeared.
With medulloblastoma, however, challenges tend to be bigger. The tumor affects the cerebellum, which is responsible for motor control. Each year, 25 thousand cases are reported — rarely in adults. Treatment has barely progressed since the 1980s. It is aggressive and affects the child’s development. The cure rate reaches 70%. The other 30% normally don’t make it. “We end up on the wrong side of the statistics,” says Goldsztein. There are no protocols for such cases. The only way out is to attempt experimental treatments.
Goldsztein, then, looked for Dr. Roger Packer, one of the greatest specialists in brain tumors in children, associated with the Children’s National Hospital, in Washington. Straightaway, he donated US$ 3 million of his own money to collaborate with the advancement of studies. But he knew he had to go the extra mile. In 2021, he structured the MBI to expand fund raising and to finance a pool of laboratories dedicated to testing new paths towards the cure. Currently, Frederico is doing well and his illness is under control. And the fact that research is quickly advancing brings hope to thousands of other patients.
In this chat with PUCRS Magazine, Fernando Goldsztein talks about the journey of the MBI. He also talks about the Conexões de Valor (“Connections of Value”) project, an event that presents actions from the University’s alumni, inspired by his experience in the Massachusetts Institute of Technology (MIT).
It was a dramatic moment. We reached an impasse, because there is no protocol for cases such as this. Medulloblastoma affects 30 thousand children every year. 10 thousand of them will perish. I felt I had to contribute to change this situation. So I contacted Dr. Packer and made an initial donation. It was an expressive amount, but I knew it wouldn’t be enough. With this money, Dr. Parker was able to begin setting up a team made up of some of the best scientists in the world. Today, the project assisted by the MBI features a pool of 13 laboratories, located in the USA, Canada and Germany. The ecosystem includes three of the five greatest specialists in medulloblastoma. The goal is to development treatments that can lead to the cure for the disease.
The 13 laboratories work online, collaboratively and in synergy, in order to achieve new breakthroughs. In less than three years, we already have four clinical trials — two of which have been submitted to the FDA. This is unprecedented. Overall, these studies demand more time. New experimental treatments are expected in the next two years. The structure set up by Dr. Parker deserves all the credit for this. All I did was find him.
They are all based on immunotherapy, a technique that uses the body’s own immune cells. Lymphocytes are trained to attack tumor cells. There are cases of childhood cancer, such as leukemias, that are being solved like this. We want to know if immunotherapy works for solid cancers. The more clinical trials, the higher the chance of finding an effective protocol.
This is Dr. Michael Taylor’s work (University of Toronto), who has been supported by the MBI. But it is something that goes beyond our foundation. The idea is that, in the future, a test will exist capable of detecting if the child will or will not have medulloblastoma. The process would be similar to that of bowel polyps. You remove them to avoid the development of the tumor. The project is still in its very early stages. It will take decades to achieve a vaccine, for example. But it is an advance.
The average of cases, although seemingly high, is inexpressive, statistically speaking. Because of this, there is no interest from the pharmaceutical industry or from the governments. It is only possible to change this through philanthropy.
Research was already more advanced in other countries. The laboratories themselves weren’t chosen at random. They all had funding to study cancer treatments in children. The difference is that these investments usually happen through grants — which are given to projects that apply for it. The MBI model is different. Resources are 100% directed at this ecosystem that studies medulloblastoma. It is such an unassisted disease that a Brazilian initiative had to arise to fund studies in the USA, Canada and Germany. That is also unprecedented.
Yes, the focus goes beyond the cure. Our goal is to raise awareness on the topic. We want to show that this disease and these children have always been abandoned by society. The treatment has remained the same for the past 40 years. Since then, technology has changed in many senses, and so has medicine. But medulloblastoma patients are still sentenced to a very high-risk approach. Changing this scenario is the very essence of the MBI. And I believe this awareness can encourage more families to take this kind of action and help address other rare diseases.
Tulio Milman [president of PUCRS’s Science and Technology Museum’s Associação de Amigos] told Br. Evilázio Teixeira about the MBI. He found the project innovative and invited me to discuss it. From there, the idea for this initiative came up to integrate the university’s re-engagement strategies with its alumni. The first edition, held in November, featured the participation of breast specialist Maira Caleffi, president of the Instituto da Mama do Rio Grande do Sul (Imama), and professor Jorge Audy, Superintendent for Innovation and Development at PUCRS and Tecnopuc. Without a doubt, it was the first of many.
It is a great source of stories and connections for PUCRS. The alumni are assets that need to be used. Americans do this very well and are seen as a reference.
Because it is so comprehensive, the Business Administration program opened many doors. I had great professors. And then, of course, it is up to the student to find their focus. I completed two Master’s degrees, one from Fundação Dom Cabral and another from MIT. But the foundation was the culture and the information received at PUCRS. This solid foundation really helped me in my career and in this challenge we are leading.
