In a recent meeting, KnowTheGlow and FLOGA came together to discuss pressing issues and potential collaborations in the fight against childhood cancer. Megan Webber, Co-Founder of KnowTheGlow, and Helene Dameris, Director of Global Outreach, met with Georgia Kokkinou, Vice-President of FLOGA, and Dr. Maria Pefkianakis, an ocular oncologist who successfully chaired the recent European Retinoblastoma Group (EURBG) conference in her city of Athens, Greece this June. The meeting highlighted the urgent need for improved treatment facilities, early diagnosis, and robust support systems for children with cancer.
Dr. Maria Pefkianakis shared the tragic case of a three-year-old girl in Greece whose Retinoblastoma (RB) was left untreated, resulting in metastasis to her brain and a terminal diagnosis. This case underscores the critical need for immediate referral and early diagnosis. Greece, along with four other countries, currently lacks a dedicated RB treatment center, making timely and effective treatment challenging, requiring patients to travel outside the country. Dr. Pefkianakis shared with Megan and Helene that FLOGA has been advocating for a reduction in the five-week window required for Greek patients to receive approval for treatment abroad. This bureaucratic delay can be life-threatening, and a streamlined process is essential to ensure children receive prompt, life-saving care.
Ms. Kokkinou recently traveled to South Africa to participate in the Mid-Year Board Meeting of Childhood Cancer International (CCI), and also to Milan to represent FLOGA at a conference organized by Childhood Cancer International Europe (CCI-E). FLOGA is active on European and global stages, partnering with CCI to develop standards of care for pediatric cancer treatment across Europe. CCI focuses on policy and capacity building, aiding FLOGA in its advocacy efforts. The discussions reinforced the necessity of establishing an RB treatment center in Greece and emphasized the need to shorten the window between diagnosis and treatment.
Ms. Kokkinou, who tragically lost her son to Ewings sarcoma six years ago, is personally invested in the improvement and accessibility of care for patients and their families. In addition to her work with FLOGA, she serves as the treasurer for CCI at a global level. FLOGA, a parent association for children with cancer, has been at the forefront of pediatric cancer care in Greece for 43 years. Established alongside the first oncology center in Greece, FLOGA provides a wide range of services, including parent housing in Athens, financial assistance, and access to primary and secondary education during treatment, in collaboration with the Ministry of Education. The organization also supports the healthcare system by maintaining daily contact with physicians and financing clinical trials. Despite the healthcare system’s financial struggles, FLOGA has made significant contributions, such as a $1.2 million donation in 2024 for equipment upgrades at the two children’s hospitals in Athens. They employ multiple staff members across the pediatric oncological wards in Athens, although this is still not enough to meet the demand. They are a trusted resource in Greece, funded primarily by individual donors and corporate contributions, who have been passionate about FLOGA since the organization’s inception in 1982.
Looking ahead, FLOGA and KnowTheGlow are planning a potential campaign in 2025, with early translation and dissemination of materials already underway. Maria Pefkianakis suggested aligning this campaign with the start of the school year to maximize its impact.
Ms. Kokkinou and Dr. Pefkianakis emphasized the critical importance of awareness and early detection in the fight against pediatric cancer. They agreed that general practitioners, ophthalmologists, and pediatricians need better education on pediatric cancers to improve referral rates and ensure timely treatment. FLOGA is advocating for these improvements, highlighting that pediatric oncology is not currently a mandatory part of the medical school curriculum in Greece.
The collaboration between KnowTheGlow and FLOGA marks a significant step toward improving pediatric cancer care in Greece. By addressing the urgent need for early diagnosis, reducing bureaucratic delays, and providing comprehensive support to families, these organizations are paving the way for a brighter future for children battling cancer. Their dedication and advocacy continue to inspire hope and drive change in the global fight against childhood cancer. At KTG, we look forward to highlighting their efforts and adding to their initiatives regarding finding, diagnosing, and locally treating pediatric eye disease.
