KnowTheGlow (KTG) and The Fred Hollows Foundation in Kenya recently came together in a powerful conversation about their shared mission: preventing avoidable blindness through early detection and intervention. What began as an introduction quickly became an exciting exploration of how the two organisations could work together to improve awareness, education, and treatment accessibility for children at risk of vision loss, including those with retinoblastoma.
Megan Webber, Co-Founder of KTG, along with Ruth Ngaruiya, KTG’s Program Manager for Africa, and Helene Dameris, KTG’s Director of Global Outreach, met with Elsie Sang, who leads FHF Kenya’s Integrated Cataract Project and Strategic Partnerships, and Nimrod Ikinu, Senior Institutional Development Advisor. He was struck by how KTG’s mission aligned so closely with FHF’s commitment to ensuring that no one goes blind from a preventable cause. While FHF has long led efforts to eliminate avoidable blindness, with a strong focus on adults and older children, support for children under five has remained an area with additional needs. This presented a valuable opportunity for KTG, with its specialized focus on early childhood, to complement FHF’s work and extend the impact to younger children through a collaborative approach.
For KTG, this meeting reaffirmed the urgency of reaching parents, teachers, and healthcare workers with information on early warning signs of vision-threatening conditions. The Glow is often first noticed by parents, but in rural communities where awareness is low and access to medical care is limited, children with retinoblastoma and other eye conditions often go undiagnosed until it is too late. FHF, with its well-established outreach programs, has built a strong foundation for delivering eye care services across 22 counties in Kenya. Recognizing the power of digital engagement, KTG has successfully used digital campaigns, storytelling, and social media to reach families and medical professionals worldwide. Nimrod saw an immediate opportunity for FHF to collaborate with KTG in leveraging digital tools to educate young parents, who are most likely to notice early signs of retinoblastoma in their children.
Elsie, who has worked extensively on integrating cultural sensitivity into FHF’s initiatives, emphasised the importance of respecting local traditions when introducing medical interventions in new regions. In many Kenyan communities, traditional beliefs and mistrust of medical systems can prevent families from seeking treatment. FHF has successfully addressed this challenge by working with religious leaders, community elders, and even successfully treated patients to advocate for eye health. Elsie described how FHF uses radio broadcasts and community health promoters to spread awareness in low-literacy regions, ensuring that vital health information is accessible to all. Megan and Ruth saw great potential in adapting KTG’s messaging to fit this trusted community-based model, helping more families recognize the signs of The Glow and seek treatment sooner.
The discussion also highlighted the need for stronger early childhood screening programs. FHF’s School Eye Health Initiative, supported by Kenya’s Ministry of Health, has already made significant strides in bringing vision screening to school-aged children. However, screening for children under five has not yet been a primary focus. KTG, with its awareness materials and expertise in early detection, could play a pivotal role in helping FHF expand its programs to younger children, ensuring that those at risk of retinoblastoma and the more than 20 other glow-related childhood eye conditions are identified earlier.
Beyond detection, the conversation also turned to the challenges of referral systems and follow-up care. Even when children are diagnosed with an eye condition, many families struggle to access specialised treatment centers due to transportation barriers. FHF has worked to connect patients with pediatric eye centers such as Kwale Eye Center and Sabatia Eye Center, but ensuring families return for follow-ups and complete their child’s treatment remains a challenge. Megan emphasised the emotional toll that a childhood blindness diagnosis can take on families and the need for psychosocial support, an area where KTG has experience in connecting parents with peer support networks and patient resources.
As the meeting came to a close, both organisations recognised the enormous potential for collaboration. FHF Kenya is eager to incorporate early childhood screening into its existing programs, and KTG is ready to provide educational resources and digital outreach expertise to support these efforts. FHF’s extensive community-based initiatives combined with KTG’s global awareness campaigns create a unique opportunity to bridge the gap in early childhood eye care and ensure that children with retinoblastoma and other blinding conditions are diagnosed and treated before it is too late.
Together, KTG and FHF Kenya share a vision of a future where no child needlessly loses their sight due to lack of awareness or access to care. By combining their strengths, they are taking an important step toward making early detection and intervention a reality for thousands of children across Kenya and beyond.
