In a world where childhood cancer often arrives without warning, moments of connection between those working to change that reality can feel quietly powerful. When Megan Webber and Helene Dameris were able to connect over zoom with Marie-Françoise Ray, President, and Marie Botto, Communication Manageress, from Retinostop, it was not just a meeting. It was a reminder of how shared purpose can bridge countries, languages, and systems of care. The conversation carried echoes of past encounters in places like Mombasa for the ISOO and Athens for the EURBG, where the global retinoblastoma community continues to find one another. Marie-Françoise reflected on stepping into her role as president just two years ago, a responsibility shaped by both urgency and compassion. Alongside her, Marie brings the voice of a new generation, leading social media and communications efforts that connect families in real time.
At the heart of the discussion was a simple but powerful idea. Awareness saves lives. Retinostop is preparing to launch an ambitious campaign that will place awareness videos in thousands of pharmacies and medical waiting rooms across France. For families sitting in those spaces, often unaware of the early signs of retinoblastoma, these quiet moments of exposure could mean everything. A parent notices a white glow in their child’s eye, asks a question sooner, and receives a sight-saving diagnosis in time.
The campaign will unfold in May and again in September, aligning with Childhood Cancer Awareness efforts that began in France in 2017. What stood out was not just the scale, but the intention behind it. The campaign will use short, accessible videos with subtitles for clarity in clinical settings, designed to be shown repeatedly so the message is more likely to be seen and recognized in real-life moments where attention is limited and early signs are often missed.
For KnowTheGlow, this approach resonated deeply.For KnowTheGlow, the conversation underscored how practical solutions can emerge in real time. Megan shared how, during a discussion about the need for ocular oncologists to quickly connect with a broader network when faced with a retinoblastoma case, Dr. Dupe Popoola from Nigeria and Susan Ybarra from St. Jude’s Global created in real time a QR code that allowed doctors to join a WhatsApp group instantly. Megan observed how this simple step is now making it easier for clinicians around the world to connect, share expertise, and respond more quickly when it matters most and marveled at the power of these new channels of communication.
The meeting also revealed the complexity behind global collaboration. Across Europe, organizations like Childhood Eye Cancer Trust in the UK, or KinderAugenKrebStiftung in Germany, and groups in Spain, Italy, and the Netherlands are each working toward the same goal while navigating through different healthcare systems, languages, and resource constraints. Coordination is not always simple, as time zones stretch conversations and professional commitments can limit availability, yet the willingness to collaborate remains strong.
Marie-Françoise spoke about meeting families at the Institut Curie, where Retinostop has built a trusted presence. Marie Botto described how Instagram and Facebook have become lifelines for connection, offering families not just information but community. Campaigns featuring family stories continue to resonate long after they are first shared, reminding others that they are not alone.
The conversation turned outward, beyond Europe, to French-speaking communities in Sub-Saharan Africa. Connections with organizations in Côte d’Ivoire and the Democratic Republic of Congo hint at what is possible when networks expand. KnowTheGlow shared its growing WhatsApp communities, where parents and doctors exchange knowledge across continents, creating a support system that transcends geography. There was talk of future visits, including the possibility of traveling to the Congo in the coming years. Not as a one-off effort, but as part of a longer journey toward shared learning and sustained impact.
As the meeting came to a close, there was a clear sense of alignment and a shared commitment to continue working together by sharing ideas and materials, co-creating campaigns, highlighting new breakthroughs and tools, and, importantly, supporting one another’s efforts. At its core, this collaboration reflects a broader goal across the retinoblastoma community: ensuring that children, regardless of where they live, have the same opportunity for early detection and timely, life-saving care from trusted resources.
