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Ependymoma Awareness Day: Butterflies give hope

Ependymoma, a rare but aggressive brain tumor, is being highlighted around the world on Ependymoma Awareness Day on May 5. Aggressive forms occur mainly in younger patients, primarily young children. At the Comprehensive Cancer Center Vienna of MedUni Vienna and University Hospital Vienna, the treatment team and young patients drew attention to this day by making butterflies themselves.

Doctors, nurses, healthcare professionals, patients and relatives around the world took center stage on May 5, 2024, the 13th International Ependymoma Awareness Day. Ependymoma patients and relatives as well as treatment teams were honored with butterflies as a sign of hope, and the day is also intended to support research. This global event has been held annually since 2012 and was created to raise public awareness of this rare tumor and highlight the urgent need for clinical trials to improve diagnostic methods, develop more targeted treatments and thus improve the outlook for those affected. To mark the day, the treatment and research team at MedUni Vienna's Brain Tumor Center for Children and Adolescents made butterflies together with patients and their families and spent time together away from treatment.

Ependymom Awareness Tag ©CCC/Silke Horcicka

PFA ependymoma: a rare but aggressive brain tumor

PFA ependymoma is a rare but aggressive brain tumor that occurs mainly in younger patients, primarily infants, with an average age of three years at diagnosis. In particular, recently identified high-risk groups are associated with a poor prognosis, as they usually recur even after complete removal of the tumor and subsequent radiotherapy and chemotherapy. Even with currently available standard therapies, the 10-year overall survival rate is only 60 percent.

Brain tumor center for children and adolescents

The Brain Tumor Center at the Medical University of Vienna is an international competence center for the treatment of tumors of the brain and spinal cord in children and adolescents. The highly professional interdisciplinary team offers treatment and care for all health and psychosocial aspects associated with these diseases. At the Brain Tumor Center Vienna, cutting-edge research is carried out as part of a cross-institutional platform to better understand pediatric brain tumors and shape the future of cancer treatment.

"At the Brain Tumor Center for Children and Adolescents Vienna, we are working together to shape a better future for our patients," says Johannes Gojo, Professor of Pediatric Neuro-Oncology at MedUni Vienna. He is leading an interdisciplinary team of pediatric brain cancer experts in a project entitled "Targeting DNA damage response to eradicate ependymoma persister cells (DEEpend)". The overarching aim is to translate promising research results for a particularly aggressive type of brain tumor into the clinic. This year, he received the first CERN PFA Ependymoma Translational Research Award from the National Brain Tumor Society (NBTS), worth 450,000 dollars over three years, for the team's work.

Das Team des Hirntumorzentrums für Kinder und Jugendliche an der Medizinischen Universität Wien gemeinsam mit Patientinnen und Angehörigen ©MedUni Wien, Silke Horcicka

The team of the Brain Tumour Centre for Children and Adolescents at the Medical University of Vienna together with patients and relatives on the occasion of Ependymoma Awareness Day on 5 May 2024.