The Lone Star State Welcomes One Retinoblastoma World 2026 | Day One Review
Monday October 26, 2026
The vibrant San Antonio Riverwalk set the stage for the 8th One Retinoblastoma World conference, uniting over 200 guests from 9 countries and 23 US states in person and over 130 virtual attendees. In part one of a three-part series, Event Chair and WE C Hope USA President, Marissa D. Gonzalez, captures highlights from this landmark gathering.
A Texas-Sized Welcome at The Alamo
Our pre-conference festivities kicked off at the historic Alamo, just a few minutes from our conference hotel. Guests dined on Texas fare, including a taco bar, sliders, a nacho station, and icy margaritas. The heat didn’t dampen the lively atmosphere, complete with the Houston-based band, Hill Country Jane, pumping out tunes as guests sang along and mingled.
Eyehesive CEO and Founder Shelby Perry rocked the Welcome Reception with her blue-eyed cowboy boots!
Guests enjoyed beautiful views of The Alamo, its church, and the historical artifacts on display while getting to know one another.
Guests get excited for a Texas BBQ dinner and live music with World Eye Cancer Hope! From left to right: WE C Hope USA Board Member and Rb mom Lizzie Hansen, WE C Hope USA President Marissa D. Gonzalez, Rb mom Denice Lopez, her children and Rb survivors Jaylen and Ayla, and WE C Hope USA Board Member Melissa Mills.
The reception served as a relaxed environment to break the ice for first-time conference-goers and allowed guests to make connections before formal programming began the next day.
Attendees traveled from across the United States, including Rb mom Kristin Webber, who drove from Arkansas with her mother and two daughters to experience One Rb World and meet other families. She expressed how powerful the event was and the invaluable time her children spent meeting others their age who had walked a similar path.
Rb mom Kristin Webber and her family join the family fun at The Alamo!
It Takes a Village… and Ours Showed Up!
After a jubilant conference welcome reception, we were excited to get started with our first day of programming! Saturday, September 12 brought lively chatter in anticipation of the weekend as guests settled in for the first session of the day, It Takes a Village: The Patient Support Team.
Carol L. Shields, M.D., Director of the Ocular Oncology Service at Wills Eye Hospital in Philadelphia, created and narrated an informative video documenting behind-the-scenes of an examination under anesthesia (EUA), a procedure nearly all Rb patients undergo during the diagnostic process.
CHLA Nurse Practitioner Allison Wang answers audience questions during the session: “It Takes a Village: The Patient Support Team”.
This glimpse into an EUA day was complemented by our second speaker, Concetta DiDomenico, Neuro-Oncology Nurse Practitioner at Children’s Hospital of Philadelphia (CHOP). She presented on what comes next after sedated examinations and how CHOP and Wills Eye Hospital work together to diagnose and treat retinoblastoma patients.
Nurse Practitioner at Children’s Hospital Los Angeles (CHLA), Allison Wang, showcased the importance of her position in pre-operative measures related to Rb in her presentation, “The Role of a Nurse in the OR.” She discussed different types of non-invasive imaging such as fundus, B-Scan, and optical-coherence tomography (OCT), as well as her constant involvement in familial support through first-touch conversations and being an accessible source for Rb information.
Our final presenter and session moderator, Cassi-Jo Groshek, a Physician Assistant at St. Jude Children’s Research Hospital in Memphis, Tennessee, wrapped up the session with her presentation, “Putting it All Together: Role of the Ophthalmology PA at St. Jude.” She began by describing the mission of St. Jude as advancing cures and means of prevention for pediatric catastrophic diseases and explained how the hospital came to be a world leader in childhood cancer.
During an overview of the typical evaluation and treatment timeline for children diagnosed with retinoblastoma, Cassi-Jo described her role supporting the patient, their treatment, and their family before and after an EUA. She stressed the importance of centering the family’s wellbeing during the process, saying that “coordinating care is not simply scheduling appointments: it is helping families navigate a complex journey with as little burden as possible. Families should not have to become the care coordinators for their child’s cancer journey.”
Smiles all around at One Retinoblastoma World 2026! Left to right: Physician Assistant Cassi-Jo Groshek, Ophthalmologist Brenda Gallie, Consultant Ophthalmologist Kahaki Kimani, St. Jude Global’s Susan Ybarra, and Pediatric Oncologist Rachel Brennan.
Innovations in Retinoblastoma
Next on the schedule was the Innovations in Rb session, bringing together leaders in research from Canada, Spain, and the USA.
Attendees were given a snapshot of the current state of drug therapy in “Innovations in Drug Delivery for Retinoblastoma,” presented by Arun Singh, M.D., the Director of the Department of Ophthalmic Oncology at Cleveland Clinic’s Cole Eye Institute in Cleveland, Ohio.
After a history of the evolution of therapy for retinoblastoma from 1850 to the present, Arun covered the current limitations in Rb drug administration and noted current efficacy studies and clinical trials for the chemotherapy drug topotecan.
Conference Scientific Committee Co-Chair and Chief of Ophthalmology at Children’s Hospital Los Angeles, Jesse L. Berry, M.D., updated the audience on advancements in liquid biopsy of the aqueous humor.
Aqueous humor, or eye fluid, is collected during routine procedures. Once analyzed, this fluid “tells us how a tumor behaves: which mutations drive the tumor, how fast it grows, and whether it may resist treatment.” This groundbreaking research debuted at the 2017 One Rb World conference in Washington, D.C.; nine years later, Jesse and her team at CHLA are changing the landscape of retinoblastoma diagnosis and treatment.
Some of the most meaningful moments happened between sessions. CHLA Chief of Ophthalmology Jesse L. Berry and the Moitra family from Florida connect during a break.
New to One Rb World was our final speaker, Kathleen Ruddy, CEO of The St. Baldrick’s Foundation. The organization is dedicated to “supporting the most promising research to find cures for childhood cancers and give survivors long and healthy lives.”
Kathleen gave an overview of the various funding opportunities available and focused on research grants available in the field of retinoblastoma. After the conference, she expressed her gratitude for meeting many inspirational people and learning so much from her fellow presenters and the Rb families in attendance.
Speakers touched on other treatment advancements, including the presentation, “Non-Chemotherapy Treatment for Retinoblastoma,” from Oncologist Guillermo Chantada, M.D., of the Hospital Sant Joan de Déu in Spain, and Wisconsin Children’s Ophthalmologist Aparna Ramasubramanian, M.D.’s “Sustained-Release Topotecan Episcleral Chemoplaque for Retinoblastoma.”
Brenda L. Gallie, M.D., Ophthalmologist in the Retinoblastoma Program at The Hospital for Sick Children in Toronto, Canada spoke on the importance of patient-provided data in establishing evidence-based treatment guidelines with the use of DEPICT Health in her talk, “The Importance of Data.”
Keynote Address – Rare Retinoblastoma: Key to Cancer Discoveries
Jesse L. Berry had the privilege of introducing our keynote speaker, Brenda L. Gallie. In her introduction, Jesse said, “One of the most special things about Brenda is the way that she cheerleads for patients and survivors, but also the really special way that she cheerleads for doctors.” Jesse recounted how Brenda was one of the few supporters of her ambitious aqueous humor liquid biopsy research, just one of many examples of how Brenda champions fellow medical professionals.
Brenda L. Gallie shares how Retinoblastoma has helped unlock wider cancer discoveries in her keynote presentation.
Brenda’s keynote, “Rare Retinoblastoma: Key to Cancer Discoveries,” was a moving look at how far care has come over her career. She began in 1973, when, as a young eye doctor in training at The Hospital for Sick Children in Toronto, she met a child whose eye cancer was found too late to save.
From there, Brenda traced how lessons learned from retinoblastoma have shaped cancer care more broadly, from understanding the heritable form of the disease to recognizing the long-term harms of older treatments like radiation. She also noted that the World Health Organization now prioritizes retinoblastoma as one of its six index cancers because of the large gaps in survival between different parts of the world.
She then shared hopeful progress, including Chemoplaque, a newer treatment placed directly on the eye. The first child to receive it, in 2017, is now nine years post-treatment with 20/40 vision in his remaining eye. She introduced a new “Consequence Score” to measure the side effects of different treatments and invited people with lived experience of retinoblastoma to help shape it by taking a short survey.
Brenda closed with DEPICT Health, a secure global platform launching in 2026 that lets families and care teams share each child’s treatment history for life, with the goal of one day using simple blood tests to catch second primary cancers early in survivors with the heritable form.
The Complexities of Treatment Decision Making
One of the most difficult parts of a childhood cancer diagnosis for parents or guardians is the multitude of life-altering decisions that are placed in front of them. From chemotherapy options to eye removal, each choice can have a lasting impact on the patient and the entire family.
In the Treatment Decision Making panel, conference Scientific Committee Co-Chair Patricia Chévez-Barrios moderated and presented on molecular pathology. Patricia’s role as the Director of the Ophthalmic Pathology Residency Program at Houston Methodist Hospital in southern Texas underscores the importance of pathology in advising on treatment.
Reflecting on her role at One Rb World, Patricia said, “The One Rb World meetings are the most rewarding ones that I have attended throughout my career. Thank you for a wonderful program!”
Selfie time at One Rb World! Left to right: Pediatric Oncologist Daniel Ortiz-Morales, Pathologist Paty Chévez-Barrios, Marissa D. Gonzalez, and Orthoptist and WE C Hope Oceania CEO Sandra Staffieri.
A second member of the conference Scientific Committee, Dan S. Gombos, M.D., joined us virtually for a pre-recorded talk about trials led by the Children’s Oncology Group (COG) and the challenges surrounding the formation of a national strategy for retinoblastoma in the USA. Among the barriers, Dan listed:
- USA lacks a single treatment strategy for Rb.
- Individual Rb treatment centers:
- Tertiary care centers: Ocular/Pediatric/Interventional expertise.
- No regulatory oversight.
- Centers offer similar but not identical approaches to care:
- Intra-Arterial.
- Intra-Vitreal.
- Intra-Venous.
Additional speakers included Kasra Khatibi, M.D., Neuroradiologist at CHLA, spotlighting “All About Intra-Arterial Chemotherapy: An Academic, Parent-Centered Evidence Overview,” and Pukhraj Rishi, M.D., Ocular Oncologist and Associate Professor at the University of Nebraska Medical Center in Omaha, presenting on “Setting Up a New Rb Service in the American Midwest.”
Adult Survivors and Thrivers
In one of the most tear-filled sessions of the conference, WE C Hope USA Secretary and unilateral survivor Clayonia Colbert-Dorsey helmed the Adult Survivors panel. Clay’s command over any stage she takes is always a highlight of One Rb World, and this year was no different.
All smiles between sessions at One Rb World! Left to right: Rb sibling Dana Mackey, WE C Hope USA Vice President and Rb mom Lori Baños, WE C Hope USA Secretary and Rb survivor Clay Colbert-Dorsey, and Rb mom Lori Weber.
“When I walked into the One Rb World conference in 2017 in Washington, D.C., I found my tribe. Now you all are my family,” Clay remarked. She expertly navigated the stories of the other four panelists: bilateral survivor Mark Lubash from Southern California; Ruth Greenslade, bilateral survivor and Rb mom from Minnesota; DJ Burzon, unilateral survivor from New Jersey; and unilateral survivor Nerea Goni from Southern California.
Nerea, a Ph.D. Candidate at Keck School of Medicine of USC, inspired audience members as she shared that her pediatric cancer diagnosis led her into science and ultimately to research retinoblastoma and contribute to the future of treatment for the disease. Nerea’s mom, Martha, and sister, Naiara, proudly cheered her on from the crowd.
DJ joined us virtually and rawly described how meeting survivors for the first time at WE C Hope’s 2023 Mid-Atlantic Rb Family Weekend in Washington, D.C. allowed him to feel included for the first time. He spoke candidly about eye loss, survivor guilt, and how vital finding kinship in the Rb community has been.
Mark Lubash is a second-time One Rb World conference attendee and first-time speaker and has jumped right into the “thriver” moniker. Mark did not meet a fellow survivor until he was 65 years old at the 2024 One Retinoblastoma World conference in Hawaii, which he attended with his wife, Ronna. Last year he brought his 93-year-old father, Chuck, to WE C Hope’s Southern California Rb Family Day, where the duo spoke openly about finding this community later in life.
San Antonio’s Most Wanted! Rb survivor Mark Lubash and his wife Ronna round up some fun at the photo booth.
Rb mom and WE C Hope USA Board Member Lizzie Hansen saw her young son Klark’s future when hearing the survivor panel, remarking, “The whole conference was perfect, but getting to hear from survivors who have lived through this journey showed us parents who are still young and new to all of this how wonderfully you can thrive after retinoblastoma. I will never forget that feeling.”
Each survivor detailed struggles, both medical and emotional, along their journeys. Celebrating as thrivers does not come without many struggles and obstacles along the way. No one held back from these parts of their story, offering a real-world glimpse into the life of an adult who battled pediatric cancer.
By the conclusion of this session, there was not a dry eye in the house. Hematologist-Oncologist Anne Susanty, M.D., who traveled from Indonesia, shared her thoughts about the conference and the Adult Survivor panel by saying:
“This is my first time attending One Retinoblastoma World, and overall, it was beyond my expectations! Incredible work from World Eye Cancer Hope. We are not only here to learn, to cry, and to laugh, but also to engage with the community around retinoblastoma. I spoke with survivors and met loving parents from around the world who are raising their children beautifully. I meet a new cancer patient every day.
“I treat their disease without knowing their background beforehand, yet they stay connected with me as lifelong survivors. I want to ensure that everything I learn is not just appropriate for the disease but for humanity.”
Pediatric Hematologist-Oncologist Anne Susanty has some fun at the photo booth.
All About Prosthetic Eyes
Our final session on day one was All About Prosthetic Eyes, a panel that we have held at the past four conferences. Each new event brings updates about the process of eye-making and how various surgeries related to Rb can affect the socket and lids.
Joining us from the eye-loss community was advocate Shelby Perry, who lost one eye five years ago in a snowboarding accident. As she recovered from her accident, she felt a pull to unite the eye-loss and prosthetic eye community, founding Eyehesive and the “One Eye Gang” movement. Shelby has been educating her followers about the warning signs and symptoms of Rb, and continuing to encourage the eye-loss community to stand together and support one another.
Proud members of the One Eye Gang! Shelby Perry of Eyehesive and Rachel Mayta of The Fun Eye Fund brought style and support to the conference.
Rob Riercy, a Board Certified Ocularist at Ocular Prosthetics in Los Angeles, gave a presentation titled “Behind the Prosthetic Eye: Understanding Orbital Implants.” Rob reviewed the types of orbital implants used for children and adults, and explored the different challenges associated with both. He closed with examples of “fun eyes” he has created as a form of self-expression for his patients.
The session moderator was Board Certified Ocularist Marcus Soper from Soper Brothers & Associates in Houston, Texas. Marcus’s presentation, “What Is an Ocularist and What Do We Do?” helped introduce the basics of ocularistry and touched on his work with Kids Kicking Cancer TX, an organization that provides free prosthetic eyes to children in need.
Ocularist Camillie Loyer from Loyer Artificial Eyes in Melbourne, Australia, joined us virtually to discuss her work with both children and adult patients. She shared that a key aspect of her work is gaining both friendship and trust, especially from her younger patients, and educating survivors and parents about genetic testing and counseling.
Meanwhile in the Child Life Room…
The Child Life program was led by Certified Child Life Specialist (CCLS) and WE C Hope Child Life Director, Morgan Livingstone, with the assistance of CCLS Jocelyn Leworthy, as well as many generous volunteers. In part three of our conference blog, there will be an in-depth overview of the Child Life program, but for now we invite you to enjoy a peek into our activities!
Reach for the sky! Our young attendees got moving with a stretch session led by some very strong special guests from the San Antonio Pro bodybuilding competition, who we shared the event venue with.
Hats off to our young designers! Kids added their own flair to cowboy hats and trucker caps during the Child Life program.
Through play, kids get to be the doctor for a change. CCLS Jocelyn Leworthy joins in as young attendees care for their stuffed animal patients during the Child Life program.
That’s a Wrap on Day One, Y’all!
As day one of One Rb World 2026 wrapped and guests made evening plans with their old and new friends, our team could not have been happier with the day.
As the Event Chair for the past decade for this conference, it was tremendous to witness all the tireless efforts come to fruition. Reaching almost 60 virtual participants and over 200 in-person folks on day one, we proved that everything really is bigger in Texas! Knowing that our work is changing the lives of fellow survivors, families, friends, and the amazing doctors and medical professionals who treat Rb across the globe will always be one of the things I am most proud of in my entire life.
Stay tuned for parts two and three of our conference blog.
If you would like to ensure family programming events in the USA continue, please consider making a tax-deductible donation to World Eye Cancer Hope USA.
About the Author
Marissa Gonzalez resides in Southern California and is an event director. She is a founding board member, and current President of World Eye Cancer Hope USA, and was Event Chair for the One Retinoblastoma World Conference in 2017 and 2021. In her downtime, Marissa enjoys travelling and going to Disneyland.
NYT Opinion | It Takes A Lifetime to Survive Childhood Cancer.
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