In the fight against childhood cancer, early detection is often the difference between life and death. It is a battle that KnowTheGlow (KTG) and the Uganda Child Cancer Foundation (UCCF) are both determined to win. Recently, KTG’s Program Manager for Africa, Ruth Ngaruiya, and Director of Global Outreach, Helene Dameris, met with Moses Echodu, Executive Director of UCCF, and Dr Derrick Bary Abila, Research Program Lead, to explore the pressing challenges in childhood cancer care in Uganda and discuss how they could work together to make a lasting impact.
Moses shared the inspiring story of UCCF’s journey, which began in 2006 with the goal of providing psychosocial care for children suffering from cancer. What started as a foundation to mobilize public funds for treatment has since evolved into a fully-fledged NGO, expanding its focus to include advocacy, awareness, research, and patient support. As UCCF approaches its 20th anniversary next year, its efforts have only intensified, with new initiatives aimed at ensuring more children are diagnosed and treated before it is too late.
One of the major obstacles in Uganda is the high rate of illiteracy among adults. Many parents and caregivers simply do not recognize the early signs of childhood cancer, leading to dangerously late diagnoses. To combat this, UCCF is focusing on educating the next generation through its “Three C’s Program – Children Caring About Cancer.” This initiative brings cancer education to high school students, with the belief that building awareness among young people today will create a more informed society in 20 to 30 years, where early diagnosis is recognized as essential.
Beyond the classroom, UCCF also conducts outreach in churches and local markets, where large gatherings provide the perfect platform to educate mothers, aunts, and other caregivers. Moses emphasized that in Uganda, mothers play the most critical role in their children’s health since they spend the most time with them. By equipping mothers with the knowledge of early cancer signs, UCCF hopes to significantly improve early detection rates.
Collaboration is at the heart of UCCF’s mission. They partner with St. Jude Children’s Research Hospital, Memphis, Tennesse for childhood cancer initiatives and work closely with Nation Media, one of East Africa’s largest media organizations, to spread awareness. UCCF is also a member of Childhood Cancer International, the largest patient support organization for childhood cancer. However, advocacy is just as crucial as education. UCCF actively engages with members of Parliament and local council leaders, pushing for policies that prioritize childhood cancer care and improve survival rates. Their efforts are centered on getting Uganda’s Childhood Cancer Survival Policy passed—an initiative that could drastically change the landscape of pediatric cancer treatment in the country.
Beyond policy, UCCF also provides direct patient support. Through play therapy, counseling, transportation assistance, and a nutrition program, they ensure that every child receives three to four meals a day during treatment. Proper nutrition plays a key role in how well children respond to cancer care, making this one of their most impactful programs. They also organize the Childhood Cancer Colour Run in May, a major event that raises awareness and funding for their work.
Dr Derrick Abila, UCCF’s Research Program Lead, highlighted the importance of understanding the challenges children face on their journey to diagnosis. Their research program, now in its second year, is uncovering the barriers that delay early detection and treatment. He emphasized that while childhood cancer presents many challenges, retinoblastoma is among the top five cancers they encounter, and it remains highly curable if caught early.
Derrick also shared how passionate he is about training medical students, believing that educating future doctors will play a crucial role in improving early detection rates. UCCF is actively involved in Uganda’s National Pediatric Cancer Steering Committee and is one of the focus countries for the World Health Organization’s (WHO) Global Initiative for Childhood Cancer Control (GICC).. These developments represent major strides in Uganda’s fight against childhood cancer, but much work remains to be done.
The meeting also touched on the deeply personal motivations behind UCCF’s work. Moses shared the story of Jesse, the son of a doctor at Mulago Hospital, who was diagnosed with childhood cancer. Jesse’s father had saved countless lives in his career, yet he found himself in need of help when his own child was fighting for survival. This experience led to the creation of UCCF—not named after Jesse, but designed to be something bigger than one child’s story, something that could help thousands. Moses himself has been part of UCCF since 2015, after meeting Dr. Jackson, a survivor treated at Mulago Hospital. Though he originally planned to pursue a career in IT, Moses felt a deep sense of responsibility during the COVID-19 pandemic when UCCF faced financial difficulties. Realizing how much the organization needed him, he stepped in to help, and today, he is one of its longest-serving leaders, guiding a young and passionate team toward their mission.
UCCF collaborates with multiple medical institutions, including the Uganda Cancer Institute and Ruharo Eye Hospital, where children with retinoblastoma receive specialized care. Derrick confirmed that retinoblastoma cases are regularly treated at the Uganda Cancer Institute, which provides all three modalities of treatment—chemotherapy, radiation, and surgery. He also noted that Uganda has an ophthalmology department and suggested that it would be possible to start a KTG Student Chapter there, engaging faculty members to spread awareness about retinoblastoma and The Glow.
Moses mentioned that they already have a student chapter at Uganda Christian University, led by a retinoblastoma survivor who wanted to continue raising awareness. This aligns perfectly with KTG’s mission, and as a next step, KTG will provide guidelines for establishing Student Chapters, ensuring that medical students and young advocates have the tools they need to spread knowledge about retinoblastoma and The Glow.
By the end of the meeting, it was clear that KTG and UCCF share a deep commitment to early diagnosis, education, and advocacy. Together, they see endless possibilities for collaboration—from strengthening awareness campaigns to empowering medical students and community leaders.
As Uganda continues to make strides in childhood cancer care, partnerships like this one will be instrumental in ensuring that no child loses their sight or their life to a preventable disease. With KTG’s global awareness expertise and UCCF’s grassroots advocacy and support programs, this collaboration has the potential to change the future of childhood cancer detection and care in Uganda—one child, one family, and one community at a time.
