A Gift Beyond Zoom: KnowTheGlow at One RB World 2026
Most weeks, Megan Webber and Helene Demeris connect with doctors, volunteers, and patient families scattered across the globe through a screen, a scheduled Zoom call squeezed between time zones. So when the two of them landed in San Antonio, Texas from September 12–14 for One RB World, hosted by World Eye Cancer Hope (WE C Hope), it was nothing short of a gift, the rare chance to connect in person with this remarkable community.
The turnout was incredible, and much of that energy traces back to founder Marissa Gonzales, whose warmth and joy seem to follow her into every room. Her mission, and WE C Hope’s, is a simple one: children with retinoblastoma deserve equal access to optimal care, no matter where in the world they’re born. This year’s program brought speakers from every corner of the globe together for sessions on genetics, genetic counseling, and the kind of global collaboration that actually moves the needle for children, survivors, and their families. An onsite Child Life program, led by Morgan Livingston, WE C Hope’s Child Life Director, Coordinator of Children’s Programs, meant parents could sit through a full day of sessions knowing their children were genuinely being cared for down the hall.
The Conference events commenced with a kickoff at the Alamo where families gathered to hear about the plans for the weekend’s events and where Megan and Marissa were each gifted personalized Texas Buckles from the McCauley’s with a big Texas sized thank you for our joint collaborations.
Saturday opened with a session on patient support and innovations in retinoblastoma, led by Dr. Carol Shields, KTG Medical Advisory Board member and Director of Wills Eye Institute, followed by Dr. Alison Wang of Children’s Hospital Los Angeles, and Dr. Arun Singh from Cleveland clinic. Dr. Jesse Berry, Chief of the Division of Ophthalmology and Director of the Retinoblastoma Program at CHLA, and a member of KnowTheGlow’s Medical Advisory Board, explained her liquid biopsy pilot program, one of the newest breakthroughs happening in the field, and how she is now collecting samples from patients around the world. Dr. Brenda Gallie of Toronto’s Hospital for Sick Children delivered a keynote, “Rare Retinoblastoma: Key to Cancer Discoveries,” and Dr. Dan Gombos of MD Anderson closed out the day with a talk on treatment decision-making. The afternoon ended on prosthetic eyes — Dr. Marcus Soper of Soper Brothers & Associates spoke on the craft behind an ocular prosthesis, and Shelby Perry gave a genuinely riveting talk on what it means to embrace the “One-eyed life.”
Sunday morning belonged to genetics. Dr. Melissa Mills of Stanford Medicine Children’s Health and Sarah Scollon, Co-Director of the Cancer Genetics and Genomics Program at Texas Children’s Hospital, gave back-to-back talks on hereditary retinoblastoma across the lifespan. Dr. Paulina Bartoszek, an ocular oncologist at Jules-Gonin Hospital in Lausanne, Switzerland, presented her project on genetic newborn screening and sharing with the audience how remarkable it would be to detect Rb at such early stages. Dr. Andrew Stacey and Dr. Debarshi Mustafi, both of the University of Washington, tackled the epigenetic drivers behind retinoblastoma risk. KTG favorite Dr. Maura Di Nicola of Bascom Palmer Eye Institute gave an impactful talk on the toll treatment takes on medical professionals themselves, and Leia Hunt-Toellner followed with a speech on survivorship as a young adult that was emotional and ultimately uplifting. A regional spotlight on México, Central and South America featured Dr. Daniel Ortiz-Morales and Dr. David Ancona discussing intra-arterial chemotherapy programs in northern Mexico, and KTG favorite Dr. Clarissa Mattosinho of Brazil’s National Cancer Institute spoke movingly on the patient experience in Brazil . The day closed with a parent panel that left the room in tears. From parent to the next, again and again, proving that a parent’s instinct is often the first and best line of defense.
Monday turned to early detection. Megan shared her own story before reviewing KTG’s global awareness campaigns and the real difference they’re making in finding children sooner. USA Ambassador Jennifer Villamar-Latif spoke about her own child’s diagnosis and how it launched her into global advocacy. Marissa closed the conference moderating a session on retinoblastoma support, followed by a global roundup featuring Sandra Staffieri, Drs. Ido Didi Fabian, Rachel Brennan, Dupe Popoola, and Dr. Kahaki Kimani.
But it was the evenings that said the most. After a full day of sessions, doctors, nurses, Child Life specialists, parents, and children still wanted to be together — sharing a meal, laughing, and trading stories as a connected family long after the formal presentations ended. That’s Marissa’s doing as much as anyone’s: a community this close doesn’t happen by accident.
