The conductor of children's brains
Speaking about Neuroscience and not listening to a Neurosurgeon would be a big mistake. But working in an entity like the Faculty of Medicine of Lisbon, where there is a 3-way relationship between the Faculty, the Hospital and the Research Institute and where there was a name of excellence like João Lobo Antunes, and not listening to one of his clinical "heirs", would be a basic research error.
Cláudia Faria is the doctor of children's brains, and studies it in the laboratory when it fails in life. She waits for me at the door of the Egas Moniz building, exceptionally punctual, and with a bright and simple look; she could be merely a researcher at the João Lobo Antunes Institute of Molecular Medicine (iMM), working in the brain tumour field, integrated into the Laboratory of Professor João Barata, who welcomed her project and allowed her to advance her research; but she is also a Neurosurgeon, chosen by Lobo Antunes, who triesto save lives every time she enters an operating theatre.
She completed her degree in Medicine at Coimbra and a general internship at the Hospitals of that University. She always wanted to be a surgeon, and her "fascination with the brain" led her to dedicated herself to Neurosurgery. She then looked for the best place to practice this speciality and quickly came to the conclusion that Lisbon was waiting for her, namely the Service led by Professor João Lobo Antunes. She arrived in 2004, and for 6 years she practised this speciality, focusing on brain tumours and paediatrics. Nowadays, despite being focused on Paediatric Neurosurgery, she has also been treating (for less time) adult patients with pituitary pathology.
What led her to the position where she is today was the combination of several factors and the right people.
One of them was Adelaide Passos, the grandmother of a boy who was diagnosed with a brain tumour and received oncological treatment at IPO Lisbon. During her grandson's illness, she decided to write a book about her memories of that period. Years later, Adelaide Passos' grandson lost the fight for his life. The fact that she spent a few years in the United States and was familiar with fundraising for charity projects led her to decide that the proceeds from her book "Heaven Can Wait" would be donated to research in the field of brain tumours. In a preface written by João Lobo Antunes, Adelaide Passos asked this well-known Neurosurgeon to ensure that the funds were channelled to research in the field of paediatric brain tumours. That path was kept for Cláudia Faria, because it was her who Lobo Antunes thought about to develop this field of research.
"What awakened my interest in brain tumours was the fact that some cases became disappointing, as surgeries that went beautifully, in which we had removed the entire tumour, had an unpredictable outcome. There is a case that I always talk about in my presentations, a child, who I remember perfectly, and who had a brain tumour; the surgery went beautifully, we removed the entire tumour and then performed the usual therapeutic protocol (radiotherapy and chemotherapy), but a few months later the illness returned. The child eventually passed away. This was around 10 years ago, and then I realised that there was something else that I had to know about tumours, because surgery, on its own, wasn't enough. That aroused my interested in the molecular biology of tumours and their genetic characteristics."
During the internship, a PhD program aimed specifically at physicians - called the "Advanced Medical Training Program" and supported by the Gulbenkian and Champalimaud Foundations, and by the Science and Technology Foundation (FCT) - was launched. Once again, she had the support of Lobo Antunes, "who was always a person with enormous vision and who identified certain characteristics in people that, sometimes, they themselves didn't know they had". She entered this program, and for 6 months she had scientific training. At the end, she had to write a research project; she looked at the most common malignant paediatric brain tumour, medulloblastoma, the same tumour that betrayed her with the child she had operated on. The place where she would develop her study had to be a leading international centre, "in order to continue to learn with the best", she explains. She contacted Professor James Rutka, a neurosurgeon and researcher of paediatric brain tumours, and left for the Labatt Brain Tumour Research Centre at the Hospital for Sick Children in Toronto (Canada), where she developed her PhD project for 3 years. It was in Professor James Rutka's team that she identified a drug that proved to be effective in her laboratory studies in treating the most aggressive form of medulloblastoma. Currently the team is developing a clinical study for patients with this type of tumour. For 3 years she dedicated herself exclusively to scientific and research activity. "In the operating theatre, I was like a fish in the water, and I had the illusion that, if I stopped for three years, my hands would no longer know how to operate. Once again, at that point in time, Prof. Lobo Antunes told me that this wasn't true because he had been through the same experience in New York during his internship, where he too had only researched for 2 years. He told me not to be afraid, because learning how to research helped me to gain more tools as a physician. And now I understand, what controls my hands is my brain, and as long as my brain knows what it has to do, my hands will know how to do it".
She returned to Lisbon in 2014, to the Santa Maria Hospital (Lisboa Norte Hospital Centre), but felt that to be a complete physician she would have to continue her research. It was what she calls a "lucky star", a set of many happy factors that allowed Cláudia Faria to reconcile the two worlds: "at the time of my return, the support of Professor Lobo Antunes allowed me to continue my research. It was he who presented me to iMM researchers, such as Professor Maria do Carmo Fonseca and Professor João Barata, in whose Laboratory I now develop my research projects. Reconciling clinical practice and research is only possible because I have lots of institutional support from the Santa Maria Hospital, but also from the iMM. Now that Professor Lobo Antunes left, Dr. José Miguéns, current Director of the Department of Neurosurgery, continues to understand how important being a physician-researcher is to me".
The demands and unpredictability of the clinical activity dominates the great majority of her timetables, but every day, in the afternoon, the iMM is her second home. "My perfect day is one where I start treating a child with a tumour in the Hospital, for example, and in the afternoon I come to the laboratory to analyse the tumour, get the cells to grow in culture, and run experiments. This is like ending the cycle, because it can facilitate discoveries, identify therapies that can come to be used in the clinic and complement surgical activity".
The glint in her eye doesn't fade when I ask her whether failure is also part of the script of a physician who touches a child's brain: "our obligation, first of all, is to always do our best. This implies always learning from the best and discussing the cases with other colleagues, even at the international level. Of course there are failures, but this is why I do research. I know that in addition to surgery, when the tumours aren't benign and aren't completely resectable, the biological component of the tumour is critical. Therefore my contribution, in addition to the surgical act, is to understand why the tumours arise, what the reason is for them ceasing to respond to the treatment at a given point.
But for Cláudia Faria to be able to do magic with her hands, this time as a scientific researcher, she must keep one of her great allies, the iMM-Biobank, at the Academic Medical Centre of Lisbon, located in the iMM. Within the iMM-Biobank is the bank of brain tumours - the Neurobank - created in 2012, and stored in it are biological samples of several patients with brain tumours. "In our case, we began collecting brain tumour samples from adults and children who had been operated on at the Santa Maria Hospital, because in terms of proximity and to make the machine work, it was easier. We collect samples of tumours, blood and cerebrospinal fluid, always with the informed consent of the patients (from themselves if they are adults, but if they are children the consent is given by their parents or legal representatives). We began in 2012 and now we already have samples from more than 1200 patients with brain tumours".
At the moment, the collection of samples isn't only restricted to the patients of Santa Maria, but encompasses other hospitals of the greater Lisbon area, both public and private, extending the area of collection to Coimbra. The network of outreach and contacts spread among fellow neurosurgeons. "Thanks to the infrastructure that is already in place at the iMM-Biobank, we have such an effective network that when someone has a sample to collect, we have a specialised carrier that goes wherever it is needed. It transports the samples in perfect conservation conditions, and they are then processed and stored by the iMM-Biobank team. Biological samples can be stored in two ways: in liquid nitrogen, at -196°, which allows preserving tumour tissue samples ad eternum, in optimal conservation conditions; or in freezers at temperatures lower than -80°, such as, for example, in the case of blood or cerebrospinal fluid".
The technical and human conditions at our disposal follow the same quality standards as the major international Biobanks. The experience that she had in Toronto shows that the same demanding standards are followed in Portugal. The iMM-Biobank allows, thanks to the variety of samples collected, establishing collaborations with national and international researchers. "The advantage of this is that in diseases like medulloblastoma, which, despite being the most common tumour amongst children, is still rare, it is possible to collect samples from several centres in order to discover changes with biological significance. Working in a network, in the international consortium called MAGIC (Medulloblastoma Advanced Genomics International Consortium) which has participants from more than 50 countries around the world (and of which our centre is a member), the goal is to collect samples from patients throughout the world, in order to study the disease more comprehensively, and make discoveries that otherwise would not be possible. As such, when the oncologist who follows the child needs more detailed genetic studies of the tumour to work out the most appropriate treatment, we facilitate the process by sending the samples to specialised laboratories in Canada or Germany. But all of this is only possible because we have our funding, which is the most important thing".
Alongside the visionary support of Adelaide Passos, who wrote a second book about her experiences in Africa, "Kaya Africa", to maintain the inflow of funding, the Millenium BCP Foundation is also one of the biggest contributors to the success of the iMM Brain Tumour Research Centre. Responsible for two large donations, one in 2012/2014, and the other from 2016 to 2018, the Millenium BCP Foundation not only facilitated the launch of this project, but also supported its continuity. But, to prevent the fundraising from stopping, one of the areas that is currently being explored is the participation in solidarity events with the BTT (Brain Tumour Team). The goal is to disseminate the research taking place in the field of brain tumours among the civil community and to raise its awareness of the need to support this cause. Since 2014, the BTT has participated in the Health + Solidarity Race, organised by the Student Association of the Faculty of Medicine of the University of Lisbon. The money from the registrations and t-shirt sales is reinvested in the iMM's research. The BTT team had 61 members in the first race, and that number rose to 500 in 2017. And everyone runs, health professionals from the Santa Maria Hospital, researchers from the iMM, physicians and researchers from IPO Lisbon and from other hospitals, but also patients, and relatives of patients who were treated by those teams in recent years. In 2017, they raised nearly €6000, which allowed buying a piece of equipment for research at the iMM. The David Vaz Association, created as a tribute to a young sportsman who died from a brain tumour, also brought new elements to the race and helped to raise more funds. "It's almost like a snowball of solidarity that brings us good people who help each other".
People who have known pain and illness up close are the people who are more involved in helping and fighting, so that others do not go through it themselves. "The most important thing is people, if there are good people, with the will to help, everything is possible".
One of the characteristics of the physician-scientist Cláudia Faria is her optimism, a characteristic that is probably inherent to any Neurosurgeon. She believes that her initiatives can change the life of any human being; that we must live our lives in an "active and intense" way. As she feels that she had such an easy life, she understands that she almost has an obligation to give back what she has received and to leave the door open for others to follow in her footsteps. I insist on asking her if she takes a break sometimes, but she only admits sporadic fatigue, because not everything goes according to plan; "at that point I turn off the light and go to sleep, so it goes away". As for clinical stories, they do not stay at the door of the hospital, they accompany her, but she says that "patients do not expect a friend, but a physician who knows how to treat their illnesses", however, empathy prevails, and there are life stories that touch us.
When she recalls the clinical case of the boy that made her the researcher she is today, she immediately tells me the name when I ask her: "I know his name, yes, it was Rui". Rui was the boy who taught her that "a super surgery doesn't always have a super result"; but he also taught her that in the face of apparent failure, life gives signs to those who are persistent, like Dr. Cláudia, so that they never stop looking for answers, and ask more questions when the first answers are found. Rui was one of those cases of a "bath of humility", an expression used by João Lobo Antunes, the master that even before she realised it, had seen Cláudia Faria as the guardian angel of the little ones.