Uniting Against Retinoblastoma – ISOO Africa 2023

Megan Webber, Co-Founder of KnowTheGlow, made her inaugural appearance at the 2023 International Society of Ocular Oncology (ISOO) Conference in Mombasa, Kenya. Her presence at the event left a lasting impression. The gathering, which hosted over 200 attendees, was a critical point of knowledge exchange that deeply moved all participants. It was alarming to learn that 50% of global Retinoblastoma-related fatalities were concentrated in Africa, and the prevalence of patients with advanced extraocular stage ailments was staggering. Despite these difficult realities, what truly shone through was the unwavering dedication and compassion exhibited by these remarkable physicians, serving as a wellspring of inspiration. Even in the face of formidable challenges within certain Sub-Saharan nations—challenges created by delayed diagnoses, late stage extraocular disease presentation, abandoned treatments, and resource limitations—the resounding sentiment was one of resolute enthusiasm for the future. The conference discussions painted a hopeful portrait: a future where collaborative efforts and a resolute global focus on Africa could serve as the foundation to not only curb Retinoblastoma’s devastation on the continent but also transcend it worldwide. The doctors, united in the face of extraordinary adversities, shared a strength in connection that echoed Megan Webber’s words: their shoulders are broad, steadfastly bearing the world’s weight.

As the world sets its sights on reducing Retinoblastoma mortality in Africa, innovative tools and programs will emerge, paving a swift pathway to diagnosis and referral, erasing the lag in treatment, and enveloping patient families in unwavering support. Within the conference, champions of child life therapy, the ArcLight scope, and awareness campaigns like KnowTheGlow helped to show possible pathways to link tools and strategies against Retinoblastoma.

Dr. Kahaki Kimani, the event’s co-coordinator and esteemed Kenyan Ocular Oncologist, crystallized the essence perfectly: “We are at war with this disease, and our response must be relentless and encompassing. We need to bring together all possible weapons from land and sky!”  The plan of attack includes developing a roadmap of care, closing gaps, eradicating delays, and granting resource-scarce nations the benefit of successful strategies from across the region.

For Megan Webber, this event represented a definite turning point, one full of inspiration and excitement. Over the past two years, KnowTheGlow (KTG) has been forging connections and engaging in conversations with doctors, researchers, and healthcare professionals from across the globe. Meeting many of these individuals in person, such as Dr. Laurence Desjardins, Dr. Didi Fabian, Dr. Andrew Blaikie, and Dr. Richard Bowman, provided a unique opportunity to witness how they are all interconnected and passionately dedicated to the common objective of early detection and treatment of debilitating conditions like RB. To stand on behalf of KTG, ready to add one more resource available to these exceptional doctors, was an immense honor. 

The prospect of collaborating with doctors, NGOs, and hospitals managing the care of Retinoblastoma-stricken families across Africa and beyond, instills us with great hope. Together we know that bridges will be constructed, strengthening each step of the process and a protective circle will be drawn around tomorrow’s families, guiding them more directly and supporting them each step of the way.

In the end, this occasion felt much like a silver lining—or should we say a “golden glow”—hinting at an upcoming era of transformation. The future is full of anticipation for the accomplishments that await when united with these extraordinary individuals.