KnowTheGlow’s Co-Founder, Megan Webber, had the pleasure of meeting with Hedley Lewis, CEO of CHOC Childhood Cancer Foundation SA and one of the world’s top 100 Pediatric Oncology influencers. Hedley’s work contributes greatly to supporting children and teenagers with cancer or life-threatening blood disorders, and their families in South Africa. Hearing about his journey and the work CHOC does was truly inspiring.
KnowTheGlow recently met with Professor Jiayan Fan and Dr. Xuyang Wen, two leaders in retinoblastoma care at Shanghai’s Ninth People’s Hospital, as part of our preparations for a nationwide awareness campaign in China planned for 2026. The introduction came through Dr. Arun Singh, and our conversation offered an inspiring look into a program that has transformed outcomes for children across the country. Megan Webber, Co-Founder of KTG and Helene Dameris, Director of Global Outreach, joined the call, along with Dr. Wen, who has worked closely with Professor Fan since 2017.
Shanghai Ninth People’s Hospital is one of the busiest and most advanced centers for retinoblastoma in the country. Dr. Wen performs intra arterial chemotherapy several times each day and the team treats between 20 and 30 young patients every week. Many families travel long distances to reach the hospital and typically stay for two days while their child receives both imaging and treatment. Both parents often accompany each child, and the hospital helps ensure that families are supported and comfortable during their stay.
Professor Fan and Dr. Wen explained that intra-arterial and intravenous chemotherapy have been available in their program for more than ten years. They follow established protocols and recommend intravenous therapy for bilateral cases. For children with high risk factors they advise enucleation. Most families arrive with advanced disease in Groups D and E but the team also sees Groups A to C, although in lower numbers. The doctors shared that awareness of leukokoria remains limited and parents often first notice that one eye simply looks different from other children’s eyes. Once a child is diagnosed locally, the referral system functions efficiently and families usually reach Shanghai Ninth People’s Hospital within three days.
Over the past decade the retinoblastoma team has cared for approximately 2,000 patients and includes ten dedicated doctors who work closely together. They view their center as a family and place great emphasis on long term relationships with the parents they serve. The team calls and emails families regularly and offers psychosocial support through monthly activities. Social workers organize games and play sessions for the children, creating moments of joy that help families through what can be a long and emotional treatment journey.
Communication is a hallmark of the program. Every family joins a WeChat group where they can ask questions at any time. Two or three doctors remain active in the chat so that parents always feel connected and supported. Some families have even shared their own experiences in these groups to help others, although public storytelling about a child’s illness is not common in China. Professor Fan and Dr. Wen explained that many parents prefer privacy and this perspective is understood and respected reflecting a cultural value that places strong emphasis on protecting the family. At the same time, both doctors expressed appreciation for KnowTheGlow’s mission and noted that our campaign images would be of great value raising awareness in ways that align with local customs.
During the meeting the team described their outreach efforts beyond retinoblastoma. They care for children with various eye conditions and visit schools to screen students. Parents tend to bring in their children only when they have concerns such as myopia or elevated pressure, which reinforces the importance of broader awareness about early signs of eye disease. Megan asked about barriers to care and was glad to hear that there is no significant delay once families suspect a problem. Years ago parents often did not recognize retinoblastoma and could feel overwhelmed or fearful, but with increased information and stronger referral pathways more families now follow the recommended course of treatment and understand that many children can be cured.
KnowTheGlow also shared campaign materials translated for families in China and discussed our plans to launch awareness messaging beginning in the nation starting in January 2026. Professor Fan and Dr. Wen were open to exploring ways to share these resources in a manner that supports families while honoring cultural preferences. KnowTheGlow looks forward to learning more from their remarkable program and to supporting awareness efforts that highlight the dedication of their team and the hope they bring to families across China.
