More than 30 renowned international experts in brain tumors in children and adolescents will meet in Barcelona on September 22 and 23 at the 3rd International Conference on Pediatric Gliomatosis Cerebri, to be held at the Abba Garden Hotel. This unique meeting, which is funded by families whose children, most of them, have died from this rare type of cancer, will bring together pediatric neurooncologists and other physicians, from leading medical centers worldwide and recognized scientific researchers in basic, pharmacological and immunological research in brain cancer in children and adolescents, and specifically, in high-grade invasive gliomas. It will also unite 14 families with these physicians and researchers in joint work sessions, to promote collaboration and discussion between those affected and the scientific community.
To make the most of the time and experience of the international experts gathered, the conference will be presented in a unique participatory and interactive format, with the aim of identifying and developing collaborative projects to advance the understanding of the disease and apply the results to identify effective treatments for patients with gliomatosis cerebri. Family foundations will announce during the congress that they will fund the first international call for research for specific multi-institutional projects on gliomatosis cerebri.
Childhood cancer is rare, and is biologically different than adult cancers, it requires focused and separate research from adult cancer. Cancer is the leading cause of death from illness in children and adolescents, and brain tumors are the leading cause of death in children with cancer. Even so, the investment in pediatric cancer research is very low compared to other more prevalent diseases. In the United States, less than 4% of funding for cancer is focused on childhood cancer, and in the last 40 years only four specific treatments for children have been approved by the FDA (Food and Drug Administration). Most cancer treatments given to children with brain tumors have not been designed for a developing brain, and often leave survivors with significant side effects.
Gliomatosis cerebri is a rare type of brain cancer. It is a particularly aggressive and invasive presentation of a high-grade glioma that still has no cure and which is still little known compared to other pediatric cancers. In children and adolescents it has an average life expectancy of 14.5 months from the first symptoms. There are no official data on those affected in different countries, but there is currently an international forum with more than 60 families created in 2013.
The conference is organized by the Izas, la princesa guisante association of Spain and Franck, a rayon de soleil of France, and additionally sponsored by family foundations from other European countries: Mathys, a rayon de soleil, and Anne, a rayon de soleil, from France; and The Rudy A Menon Foundation of England. Additional sponsors include Fe y Misericordia of Peru, and the AYJ Fund, Elizabeth’s Hope, and The Joshua Bembo Project of the United States. Representatives of 14 families whose children have been diagnosed with GC worldwide will attend.
This international meeting, which aims to consolidate the coordinated research of this disease and the improvement of patient care, has the collaboration of prestigious research centers and care for children and adolescents with cancer around the world, including the Hospital Sant Joan de Déu in Barcelona, Dana-Farber Cancer Institute in Boston (United States) and the University Medical Center of Göttingen (UMG) of the Georg-August University (Germany).
The organizing medical committee is directed by Andrés Morales MD, clinical director of Oncology and the Neuro-oncology program at Sant Joan de Déu Hospital in Barcelona. Co-leaders include Katherine Warren MD, clinical director of the Department of Neuro-oncology at Dana-Farber Cancer Institute in Boston (United States), and Christof Kramm MD, head of the Department of Pediatric Oncology and Hematology at the University Medical Center of Göttingen in Germany.
The previous conferences were held at Curie Institute in Paris, France (2015) and the National Institutes of Health, USA (2017). This year’s event “From Words to Actions” will include both separate and joint sessions. Family sessions include a focus on supporting other families impacted by GC, a presentation of the European project “Share4Rare”, a visit to the Hospital Sant Joan de Déu and a planning session to direct work over the next two years. Joint sessions will include presentations on GC research and collaborative efforts to support future research.
In addition, during the conference, the Hotel will display the largest exhibition made with polymer clay in Spain to date, “Esperanza Station”. This piece of art was created to honor children who have died from gliomatosis cerebri worldwide, with an emphasis on hope in research. The artist María Muela, a Sevillian based in Huesca for 23 years and a regular collaborator of the Izas la princessa guisante foundation, has invested more than 500 hours for more than five months and more than 12 kg of this material in the preparation of this spectacular artistic work.
The organizers have created a special logo for this conference to raise awareness about this disease, including a child’s hand, and the colored ribbons representing both childhood cancer and brain cancer united in one heart.