Uniting for a Brighter Future: Hope and Collaboration at the One Retinoblastoma World Conference

Earlier this month, Megan Webber attended the One Retinoblastoma World Conference in Honolulu, Hawaii, and left feeling more hopeful than ever about the future of early detection and global collaboration in retinoblastoma awareness. The event brought together an incredible array of voices—including parents, survivors, oncologists, ocularists, and researchers—united by a common goal: improving the detection, treatment, and support for retinoblastoma patients and their families worldwide.

The conference was a resounding success, highlighting the unique challenges and achievements of people from across the world working to combat retinoblastoma, a rare form of eye cancer that typically affects young children. It created a platform for diverse perspectives, with participants sharing their experiences, challenges, and aspirations for the future of retinoblastoma care.

Megan participated in a panel titled “Know the Glow Around the Globe,” where she had the honor of sharing the virtual stage with Dr. Andrew Blaikie and Karsten Paust from the Arclight Project and TanZanEye. They showcased their innovative work using Know the Glow (KTG) messaging and funding from We C Hope to provide Arclight Scopes in various countries across sub-Saharan Africa. These tools are critical in supporting early detection, especially in regions with limited access to advanced medical technologies.

The panel also featured many additional in-person panelists.  Cindy Mays, a KTG board member, and KTG ambassador Grace Mbugua shared their powerful personal stories as mothers of children with retinoblastoma (RB). Their unique perspectives—Cindy’s experience in the U.S. and Grace’s journey in Kenya—offered invaluable insights into the different challenges faced by families dealing with RB in diverse healthcare systems. Their testimonies highlighted the importance of support, understanding, and collaboration in improving outcomes for children globally.

Additionally, Steve McCauley, a father of a child with retinoblastoma, spoke movingly about his family’s journey and their work to provide prosthetic eyes for children in need. Helen Dimaris, the panel’s moderator and another key presenter, shared valuable research on identifying gaps in the diagnosis and treatment process, which has often delayed critical interventions for affected children.

The panel exemplified the collaborative spirit of KTG, not only in raising awareness of the telltale glow (leukocoria) that can signal eye disease but also in forging partnerships with others to support families affected by RB. The KTG team and conference’s attendees were also encouraged by mentions by the International Agency for the Prevention of Blindness (IAPB), which worked on a collaboration with KTG on World Sight Day to highlight the glow as an early indicator of childhood eye disease. Additionally, St. Jude’s Global team announced hopes to integrate KTG messaging into their upcoming outreach with a toolkit designed to assist regional teams in raising awareness about leukocoria detection.

International representation at the conference extended to countries such as China and Mexico, where plans for further engagement and awareness-building could soon take place. Many families expressed their gratitude for KTG’s outreach, thanking the team for their efforts in raising awareness and reaching more children early.

The conference also explored advances in treatment and prosthetics. Ocularists Stephen and Sarah Haddad spoke about new prosthetic eye designs aimed at boosting the confidence of children who have undergone enucleation (removal of the eye). Meanwhile, oncologists like Dr. Jesse Berry shared groundbreaking diagnostic tools such as her aqueous humor test, which can detect retinoblastoma cell growth through fluid samples. This test helps doctors identify signs of disease recurrence, improving monitoring and early intervention options.

As the conference concluded, attendees left feeling more connected and hopeful than ever. The relationships and collaborative efforts that emerged from this event promise to create new opportunities for global awareness and early detection. The conference marked a pivotal moment as the World Health Organization (WHO) has designated retinoblastoma as one of six cancers of focus for 2030.

Reflecting on this momentum, Megan Webber expressed optimism about what the next five years could hold. While 2030 might seem close, the tremendous change experienced in the past five years serves as a reminder that, with collective determination and innovation, even greater strides can be made. As the global retinoblastoma community comes together, the future looks brighter than ever.

In Megan’s words, dreaming bigger and working together can unlock possibilities that will not only save lives but also transform how we understand and treat this devastating disease. The One Retinoblastoma World Conference reinforced that the fight for early detection is advancing, and with it, hope continues to grow.

We would like to express our sincere gratitude to Marissa Gonzales and the incredible team at We C Hope for their unwavering support and collaboration. Their contributions have been instrumental in advancing early detection initiatives and providing essential resources to families affected by retinoblastoma. It is through partnerships like this that we continue to make meaningful strides toward a future free from childhood blindness.