In a recent meeting filled with shared purpose and mutual admiration, representatives from KnowTheGlow (KTG) and the Cancer Association of South Africa (CANSA) came together to discuss potential avenues for collaboration in the fight against childhood cancer. Megan Webber, Co-Founder of KTG, and Ruth Ngaruiya, KTG Program Manager for Africa and Helene Dameris, Global Outreach Director, met with three dedicated leaders from CANSA: Anina Meiring, Service Manager for Childhood Cancer; Lisa Strydom, National Manager of Care and Support; and Vera Van Dalen, Pediatric oncology support coordinator and Manager Nicus lodge. What unfolded was a powerful dialogue underscoring how deeply aligned the two organizations are in their commitment to early detection, education, and psychosocial support for families navigating childhood cancer.
Vera Van Dalen shared that while retinoblastoma remains relatively rare in South Africa overall, its incidence is notably high among specific tribes in certain regions. This localized prevalence makes targeted outreach essential—yet many families in rural areas still lack the awareness and resources to seek early care.
Megan emphasized the urgent need to deliver information in formats that are clear, visual, and approachable. Vera agreed that their rural clinics would benefit greatly from simple, beautiful posters that demystify early signs of childhood eye disease and encourage timely evaluation.
CANSA’s multi-pronged approach to pediatric cancer care has made a meaningful impact across the country. As Anina explained, CANSA prioritizes childhood cancers, with retinoblastoma among those they routinely address. Their presence spans pediatric oncology wards and includes efforts to establish information desks at hospitals—especially in public hospitals where families often lack medical aid. These “infodesks,” led by Lisa’s team, are staffed by trained volunteers who connect directly with patients, offering psychological, social, and medical information. Even if families don’t need assistance immediately, they are given materials they can return to, and CANSA continues support through tele-counseling, WhatsApp groups, and follow-up calls. From wigs to psychosocial referrals, each request is handled with care and compassion.
Lisa also highlighted one of CANSA’s most unique and culturally sensitive strategies: working hand-in-hand with traditional healers. Recognizing their influence in rural communities, CANSA’s Head of Advocacy, Zodwa Sithole, leads training for registered traditional healers—helping them identify early signs of cancer and encouraging timely medical referrals. This collaboration reflects CANSA’s commitment to inclusive, community-rooted solutions and their understanding of the vital role cultural trust plays in early detection.
Part of the discussions centered around the Arclight Scope—a portable, low-cost diagnostic tool for eye screenings. When Megan introduced the device, Anina immediately saw its potential. She expressed great interest in integrating it into CANSA’s TLC (Tough Living with Cancer) program, particularly for nurses working in underserved communities. The prospect of equipping community health workers with a tool that could enable earlier detection of conditions like retinoblastoma (RB) sparked enthusiasm, especially given the challenges of accessing young children in rural areas.
Megan raised the topic of prosthetic eye support for children who undergo enucleation due to RB. While CANSA is familiar with practitioners like Chantel Kritzinger, Lisa acknowledged that many families—especially in rural areas—struggle to access or afford prosthetics. It’s another area where KTG’s network and advocacy could support ongoing efforts.
Perhaps one of the most moving aspects of the conversation was CANSA’s deep commitment to providing families with housing during treatment. They currently operate a facility with space for 20 parents, as well as smaller units in other locations. Parents can also use all available beds to stay over if their child is in hospital. Megan and Ruth expressed admiration for this vital support, noting that these services help ease the immense burden families face when undergoing prolonged cancer care far from home.
Sharing patient stories is another area of potential collaboration. While it can be difficult to gather testimonials—given the trauma families often endure—Lisa mentioned that children with RB are being treated (in Pretoria) within South Africa and offered to help KTG connect with families willing to share their journeys. Ruth noted that KTG has identified two South African families affected by RB and hopes to amplify their voices.
Awareness remains a year-round priority for CANSA, though September, as Pediatric Cancer Month, garners heightened media attention. Both Anina and Vera stressed the importance of extending educational efforts beyond that single month. CANSA relies heavily on volunteers for outreach, yet volunteer engagement has sometimes proven challenging. Anina noted that a recent training session for childhood cancer volunteers did not yield the hoped-for results—highlighting the need for more strategic recruitment and support.
At the heart of CANSA’s efforts lies the TLC Program, led by Vera–Anina Meiring, which provides children and families not just with medical guidance, but with hope. TLC facilities focus on emotional resilience, psychosocial care, and compassionate community—recognizing that battling cancer is as much an emotional journey as a medical one.
The conversation between KTG and CANSA revealed a natural synergy: both organizations are mission-driven, deeply community-focused, and committed to catching childhood cancers before it’s too late. As they explore ways to support one another—from awareness campaigns and story sharing to community outreach and diagnostic innovation—the seeds of a powerful partnership have clearly been planted.
