Mary-Anne Debilly, a charity that gives hope to children with brain cancer

Lucas is 13 years old. Without the experimental treatment hand-crafted by these experts at the “Genomics and Oncogenesis of Pediatric Brain Tumors” laboratory at the Parisian Gustave-Roussy Institute, he would have died of brain stem infiltrating glioma, an incurable pediatric brain cancer. Eleven months later…

Lucas is 13 years old. Without the experimental treatment hand-crafted by these experts at the “Genomics and Oncogenesis of Pediatric Brain Tumors” laboratory at the Parisian Gustave-Roussy Institute, he would have died of brain stem infiltrating glioma, an incurable pediatric brain cancer. Eleven months after tumor detection, 50% of children die; Two years later, that’s almost all.

Lucas, ill since he was 6, survived. Thanks to five years of experimental treatment, the tumor completely disappeared from imaging. First. “ It gives immense hope to all these children », supports Marie-Anne Debilly, who, with scientific caution, never uses the word healing. These gliomas, not operable, are often aggressive,” One of the biggest challenges in pediatric oncology “Life expectancy of young patients There has been no significant improvement since 1959 and the introduction of radiotherapy, which is still the standard treatment. », observes the biologist. A disease that does not have a primary genetic or environmental cause. Mostly concerns the mutation of specific genes.

It is good, a former high school student of Guez-de-Balzac in Angouleme, who grew up in Soyaux, where she regularly visits her friends and her mother Marie-Noelle Debily, elected for 31 years in the municipality, is an expert. In genomics, the study of genes on a large scale has already led to significant advances in the understanding and treatment of cancer. A thesis holder in molecular biology, she joined Professor Grill’s team in 2013.

Lucas stopped all treatment

However, there is no scientific trope in the Debili family, but competence from high school. A science graduate with very good honors, his friends still recall his 20/20 in biology. “ When I entered biology school in Poitiers, I wanted to be a science journalist, but as my knowledge grew, I wanted to go deeper. » For her thesis, she worked to better understand the changes responsible for breast cancer. In Tokyo, she trained in bioinformatics before being recruited by Paris Avery University where she is a professor today.

For the first time, one of the children survived. If we can reproduce this change, we may have a solution.

The other half, in Gustave-Roussi’s laboratory, Marie-Anne Debilly focuses on decoding rare and poorly understood cancers. “When I came ten years ago, there were three of us. We are now a team of 20 to 25 people. »Together, they are leading the largest clinical trial conducted in Europe on infiltrative glioma. Like 250 other children, Lucas benefited from the BioMed 1 trial between 2017 and 2022, which includes targeted therapy according to the abnormality of each glioma. Thirty sessions of radiotherapy and the drug, everolimus for Lucas, taken daily, yielded spectacular results. “ The tumor quickly regressed and today, he stopped all treatment for a year. », observes the researcher.

So to understand Lucas’ miracle, the team sequenced all of his DNA to compare it to his sickly younger peers, something that had never been done before for this tumor. “They all have a common mutation on the cell. But in Lucas, sequencing showed that there was another mutation that made the cells more sensitive to drugs. Now the aim is to find a drug that mimics this second mutation.

“, makes the biologist popular.” I am not saying we will cure all these children, but for the first time, one of them survived and if we can reproduce this second case, we may have a solution. » The hope of being able to develop specific treatments for each subgroup of patients gives basic research meaning.

A new trial is underway

This is what pushed the researcher to join the squadron that hunts this devastating cancer in packs. “Earlier, I was further away from the clinic. Here, we have access to biopsy samples from patients that we culture in vitro to test hypotheses and discover new therapeutic opportunities. As an academic researcher, it is exciting to be so involved. » The team does not develop new drugs. “ It will take much longer and there will be fewer patients, the medicine is more expensive to make. So we look to see if there are drugs that will play a similar role. »

Of the 250 children who completed the BioMed 1 protocol, only ten did not die. These are the “long survivors”, but those who still have the tumor. Today, 360 children are involved in the BioMed 2 trial. In the laboratory, these shadowy scientists also work on mini-brains – as Mary-Ann Debilly likes to call them cerebral organoids – which they grow and into which they insert tumor cells. and continuing a project aimed at understanding the genetic predisposition to cancer.

Sometimes, the story of these little patients with such dire prognoses, whom we all want to see saved like Lucas, drives this mother of three to courage. But one thing is certain: he will end his career explaining cancer. It’s hard to want to change direction when you know that, for the first time, Lucas’ parents dared to book a vacation for Christmas. It was on the ski slopes that he celebrated his 13th birthday on 27 December.

in dates

1977: Born in Soyx. 1995: Bachelor of Science at Guise-de-Balzac in Angouleme. 2003: She defended her thesis on breast cancer. 2013: She joined the “Genomics and Oncogenesis of Pediatric Brain Tumors” laboratory at the Gustav-Russi Institute. 2023: Laboratory announces breakthrough in treatment of infiltrating brainstem glioma through Lucas’s case.