Last summer at the EURbG Conference in Athens, Greece, Helene Dameris, Director of Global Outreach for KnowTheGlow, had the opportunity to hear Dr. Arun Singh, Director of the Department of Ophthalmic Oncology at Cole Eye Institute of the Cleveland Clinic present. Known globally for his expertise in ocular oncology, Dr. Singh is not only a leader in his field but also a remarkably generous and thoughtful collaborator. Rather than focus the conversation on his many accomplishments, Dr. Singh immediately turned the spotlight to how he could help advance KnowTheGlow’s mission.
Helene and Co-Founder Megan Webber learned more about his work and explored potential opportunities for collaboration. During the conversation, he shared the latest developments in his global efforts to improve retinoblastoma (Rb) care, particularly in Ghana, where he has worked closely with Dr. Vera Essuman. Several years ago, Dr. Essuman came to the Cleveland Clinic to learn from Dr. Singh and explore the possibility of introducing brachytherapy, an advanced eye-sparing treatment option, in Ghana. While the region has previously used brachytherapy for other forms of cancer, it has not yet been implemented for ocular oncology. Although a visit by Dr. Singh to Ghana had been planned, the COVID-19 pandemic disrupted those efforts. Fortunately, the project is once again gaining momentum. Once these services are up and running, they will offer life-saving treatment within the country, eliminating the need for families to travel abroad and increasing access for countless children.
Dr. Singh emphasized the challenge of secondary delays in diagnosis, noting that this is where organizations like KnowTheGlow can play a pivotal role by educating not only ophthalmologists but also the broader network of care providers, including pediatricians, midwives, nurses, and community health workers. He shared heartbreaking examples from his own clinic in Cleveland, where two recent patients presented with advanced Group E disease, too late for globe-sparing therapies like intra-arterial chemotherapy (IAC), leaving enucleation as the only remaining option.
He pointed to successful models such as in Argentina, where eye screenings are tied to childhood immunizations. In China, early detection outcomes have improved significantly over the past few decades due to government-supported interventions. In the early 1990s, Chinese children frequently presented with advanced orbital tumors. One dedicated doctor changed that trajectory by establishing numerous satellite clinics for EUAs and early intervention. Today, Chinese physicians have published the first randomized clinical trial on IAC for Group D disease. Megan and Helene shared with Dr. Singh that KnowTheGlow is planning an awareness campaign in China in 2026, making his connections in the region especially timely.
While technological innovation continues to move the field forward, Dr. Singh emphasized that awareness remains the most powerful tool in the fight against Rb. High-tech tools, he believes, have their place, but early detection will always make the greater impact. Awareness is where the most eyes, and lives, can be saved. He views early detection as a public health imperative. When children are identified and treated early, they often become eligible for eye- and vision-saving therapies. Without timely awareness, however, those options quickly disappear.
He also discussed emerging treatments for RB. While IAC has proven effective, it remains costly, technically complex, and challenging to scale. His team is currently exploring the use of Topotecan, a low-cost chemotherapy agent with high efficacy and low toxicity delivered through suprachoroidal space. Their paper on this promising alternative was presented at the ARVO meeting (May 2025) and published in Ophthalmogy Science (July 2025). Additional pre clinical studies are ongoing.
Beyond his clinical and research achievements, Dr. Singh is passionate about education and advocacy. He has recorded videos and podcasts for rare disease awareness and offered to help amplify KnowTheGlow’s mission through similar media.
Dr. Singh’s own journey into ocular oncology began unexpectedly in 1989 during a fellowship at St. Bartholomew’s Hospital in London. Inspired by ophthalmic oncologist John Hungerford and pediatric oncologist Dr. Judith Kingston’s work, he discovered his calling in tumor care. After his fellowship at the Wills Eye Hospital (Drs Jerry and Carol Shields), he has spent more than 35 years learning and advancing the field. He spoke with admiration of the late Dr. Linn Murphree, one of the world’s foremost authorities on retinoblastoma, and shared that he and Dr. Jesse Berry had co-authored a major new textbook on the disease.
His commitment to early detection and equity in care is deeply personal and deeply global. He noted that his former fellow is now working in Hyderabad, India. Dr. Singh expressed his desire to help KnowTheGlow forge relationships in both India and China, bringing institutional support to expand awareness efforts worldwide.
KnowTheGlow is incredibly grateful for Dr. Singh’s generosity, insight, and support. His willingness to mentor, connect, and advocate brings tremendous momentum to the mission of ending preventable childhood blindness around the world.
