One Rb World 2024 Says “Mahalo” to the Retinoblastoma Community – Day Three
Page 4 of 4
Monday December 9, 2024
The final moments of the 7th One Rb World Conference in Honolulu, Hawaii, were dedicated to patients, families, and survivors, showcasing how empowering them can transform their individual experience and collective progress. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, tells of the inspiring child life programming, and groundbreaking patient engaged-research building bridges of hope and healing for our retinoblastoma community worldwide.
This is the final installment of our 3-part One Rb World 2024 Recap.
Part 1: Pre-conference social day, and One Rb World Day One.
Part 2: Our Day Two recap is a 2-page article, focused on:
- Page 1: Provision and access to life-saving care for all.
- Page 2: Advances in research and technology
Part 3: Our Day Three recap is a 4-page article, focused on:
- Page 1: Early detection and advocacy for prompt care.
- Page 2: Cure for all children, and preventing cancer spread outside the eye.
- Page 3: Keynote from NYT journalist, Pamela Paul; and global solutions.
- Page 4: Child life, patient engagement, and a massive Mahalo!
A table decorated by our lovely kiddos in the Child Life program!
Recapping Page 3…
Page 3 of our Day Three recap celebrated our final keynote and global initiatives driving progress in retinoblastoma care. From Pamela Paul’s heartfelt address to international collaborations tackling extraocular disease and preventable death, these discussions showed the unifying power of storytelling and partnership.
Head to Page 3 to revisit these inspiring moments!
Storytelling for Life: Global Solutions and Lifelong Care at One Rb World 2024 Day Three | Page 3.
Child Life – Empowering Children to Thrive
The WE C Hope team and Rb community experienced a great loss on July 31, 2024 when Rb mom and WE C Hope USA Board Member, Lisa Hester, tragically died. Lisa was a huge proponent of Child Life programming; she worked over the years with our Child Life Specialist, Morgan Livingstone, and her now nine-year-old bilateral survivor, Elijah.
We opened the Child Life session with photos and videos of Lisa and her family, including Elijah’s most recent blood draw. Here, he implemented techniques Morgan taught him, and – for the first time – completed the procedure seamlessly. Lisa knew these major victories in Elijah’s continuing Rb journey would one day come with practice, optimism, and Morgan’s guidance.
The Child Life program at One Rb World 2024 was dedicated to Lisa’s enduring memory.
In Loving Memory of Lisa Hester, who died on July 31, 2024.
Lisa was an active WE C Hope board member when she died. A table was dedicated to her memory at the conference.
A Dedication to Child Life Programming
WE C Hope Canada’s phenomenal, dedicated Child Life Specialist, Morgan Livingstone, C.C.L.S., took a break from the child life room to moderate this panel.
She began by acknowledging an unfortunate reality about her calling, saying:
“The only medical area that I seem to find continually lacking in innovation and funding is child life, specifically child life support for children with retinoblastoma.
It is something we know we need, but we still struggle to ensure children not only survive their cancer and the painful treatments they need, but also have child life play, education, preparation, and procedural support to gain a sense of mastery and coping that will help them thrive beyond their illnesses.”
Morgan reminded everyone about the importance of prioritizing pediatric cancer patients with the video The Little Clock, made by Mary Barkey, a pioneer in the field of child life.
This remarkable short film emphasizes how medical needs (big clock) always come before the child’s needs (little clock). Morgan explained:
“When we push aside the child’s little clock for our big clock – our treatment and our important schedule – we are forgetting that those play-based experiences kids need to survive and thrive through their medical treatments really should be respected.”
Morgan’s presentation and her work with the children at One Rb World 2024 were a beautiful reminder to parents and medical professionals that their kids and patients have a little clock too.
Child Life Specialist, Morgan Livingstone, reads a book titled “I Need a New Butt” to the kids during the Child Life programming.
Starlight Children’s Foundation – Out of This World Awesome!
The Starlight Children’s Foundation in Australia is one outstanding Child Life support program that educated and entertained us.
Cheerful Starlight Captains, Pelican and Cool, described the magical child life allied centers located in many Australian hospitals, and their careful, comforting procedures. They used musical performances, personal stories, inclusive description, and detailed explanations to thoroughly explain the program. They said:
“By empowering children through play, we’ve provided an opportunity to interact and connect with other kids just like them, hungry for play and self-expression whilst navigating a profound medical journey.”
Our two Starlight Captains, Pelican and Cool, delivered a fabulous presentation for our Child Life session, incorporating audio description, and making everyone feel good as they explained the Starlight program.
A Mother’s Perspective on Child Life Programming
Rb mom, Paula Dillon, was excited to reconnect with Starlight Captains, and experience the joy and growth of child life programming.
“The highlight of the day was seeing a video presentation by two Starlight Captains from the Starlight Children’s Foundation Australia, all the way from Royal Children’s Hospital in Melbourne.
I remember many moons ago how wonderful the Starlight room and Captains were, not only for Grace, but also for me. Using fun and imagination to take one away from scary, overwhelming procedures and appointments was ever so appreciated.
I loved hearing about all the awesome activities that kept the Rb survivors/thrivers and siblings entertained in the Child Life program at this conference. How wonderful to attend a family-centric event. Keep up the fabulous work!”
Watch the Child Life session.
Engaging Patients – Key Voices Driving Change
The final panel of our 2024 One Rb World conference left audiences with a clear parting message: patients and parents are vital partners in the medical community.
The panel kicked off with a compelling presentation from Frances Argento, M.Sc. candidate and graduate student at The Hospital for Sick Children in Toronto. She shared her experience developing a patient advocate committee for a rare pediatric cancer biobank.
She defined a biobank as a facility that collects and stores information (such as biological samples, medical images, and patient health data) for multiple research sites, and brings it to one central location. Frances and her team work with a children’s biobank that promotes research on pediatric eye and vision health, striving to enhance it to be one of the best in the world.
They achieve this primarily through patient engagement. Frances says this has:
“been found to increase mutual understanding, transparency, and trust between community members and research staff. Patient engagement can also lead to greater inclusion of participants in biobanking, which is really important for widespread representation and wider applicability of research results.”
Wanting to know the best way to engage patients in the biobank, Frances focused on developing the existing Patient Advocate Committee (PAC). The PAC established an eight-goal Patient Engagement Plan to support parent education and informed consent.
The outcome is that more parents have agreed to support research by providing tissue samples to the biobank. Frances is now organizing a study to further assess the impact of parent education tools developed by the PAC..
Frances closed by emphasizing that:
“What’s really important about biobanking and bringing all this information together is the power of collaboration. As we’ve experienced over the past few days, there is so much power in coming together, and bringing information together – and the ability it gives us to share this information with researchers around the world.”
Frances Argento presents the “Development of a Patient Advocate Committee for a Rare Pediatric Eye Cancer Biobank.”
DEPICT Health: A Virtual Database for Better Communication
Kaitlyn Flegg, M.Sc. is Rb Research Program Manager at The Hospital for Sick Children, and Secretary and Treasurer of the International Retinoblastoma Consortium. Her informative video presentation gave our One Rb World community hopeful news for collaborative patient care..
She covered the development of DEPICT Health, a web-based point-of-care database created by Brenda Gallie, M.D. to improve communication between Rb circles of care.
With patient consent, DEPICT Health gathers and stores data from each clinical encounter, summarized on a visual timeline. Patient families can interact with the timeline online, clicking on any data point to access event-specific information. Using DEPICT Health as a home base, this data is available to every member of a patient’s circle of care, eliminating miscommunication and confusion, and streamlining treatment journeys.
This novel development over nearly two decades inspired and filled us all with hope for the bright future our retinoblastoma community deserves.
A slide summarizing DEPICT Health and patient engagement – from Kaitlyn Flegg’s presentation “DEPICT HEALTH: Enhancing Rb Circle of Care Communication Through Digital Health Technology.”
Caregiver Perspectives on Genetic Counseling
Next, we heard from Kayla Lashinger, M.S., a Neurology Genetic Counselor at the University of Florida Norman Fixel Institute for Neurological Diseases in Gainesville. She gave a fascinating virtual presentation of her master’s thesis project that gained perspectives from caregivers of children with retinoblastoma.
Kayla distributed a survey to Rb support groups for parents in the United States, asking about their feelings, concerns, and thoughts on the helpfulness of provided resources and genetic counseling. This groundbreaking accomplishment was the first U.S. study specific to Rb genetic counseling and parents’ emotions.
Overall, results showed that parents commonly find retinoblastoma overwhelming. This often leads to psychological distress such as anxiety, depression, guilt, shame, and loneliness that may continue for years. Parents’ concerns varied about the amount of information, timing and availability of genetic counselling in relation to treatment, and access to support resources.
Kayla’s study lays an important foundation, inviting more research to improve genetic counseling and family support in retinoblastoma care.
Engaging Through Accessible Information
We were reminded during the Global Rb session about the role accessibility for patients, survivors and caretakers plays in a cancer journey. Rb mom and the newest WE C Hope USA Board Member, Somer Stanley has been working in inclusion and accessibility for 15 years, centered around improving information access for deaf, hard of hearing and visually impaired individuals.
Somer’s organization focuses on ensuring disabled people can access medical information and records. She underscored the legal requirement in the USA and many other countries that all people – no matter their physical or mental abilities – be able to access their medical information. Somer charged conference attendees to insist their medical centers adopt more inclusive and accessible methods of communication, screening and access.
Reflections on Patient Engagement
Session moderator, Helen Dimaras, Ph.D., reflected on the conference, saying:
“It’s hard to pick just one favorite part of One Rb World 2024. Of course, hearing the patients’ stories is always a highlight of the meeting for me, but I think what was really touching was educating our audience more about patient engagement in retinoblastoma. We’re loving working with patient families in our research, and there’s more and more opportunities each time we get together.”
Watch the session, Patient Engagement Strategies.
Mahalo, Hawaii!
Scientific Program Co-Chair and Assistant Professor of Clinical Ophthalmology at the Bascom Palmer Eye Institute in Miami, Florida, Maura di Nicola, M.D., said:
“Working as Scientific Program Co-Chair has been transformative as it’s enabled me to bridge cutting-edge science with the lived experiences of retinoblastoma patients and survivors. Each of their stories reminded me that our work is not just about clinical care and research, but also about creating hope, resilience, and tangible improvements in the lives of our amazing patients.”
Joining Maura’s enthusiasm, Sandra E. Staffieri, Ph.D., said:
“It was a privilege to serve as Scientific Program Co-Chair for the 7th One Rb World meeting. The depth of talent and breadth of researchers we were able to source truly made for an exciting and varied program.
I am hopeful for the future of Rb globally… for diagnosis and importantly ensuring access to treatment globally by building capacity.
As a clinician, I believe participating in a conference such as this, where the parents’ and survivors’ voices are valued, has changed my practice entirely. Seeing Rb through the eyes of those who live it is the only way to truly understand Rb. What I learned cannot be gleaned from a textbook.”
Sincere Gratitude to Our Rb Community
An enormous “MAHALO” to the World Eye Cancer Hope USA Board – your commitment to serving the Rb community was on full display in Hawaii, and you will forever have my gratitude and love.
Members of our WE C Hope USA board and team strike a pose at our photo booth! Back row, L-R, Melissa Mills, Marissa Gonzalez, Clayonia Colbert-Dorsey, Kristen Small. In front are Lori Banos and our Social Media Manager, Erika Crespo. Not all members were able to join us in Hawaii.
To the invaluable scientific programming team – thank you for convening these extraordinary panelists, whose contributions truly made this a fabulous event.
Thank you to World Eye Cancer Hope UK and their amazing CEO, Abby White, who founded One Rb World. Your dedication to WE C Hope and One Rb World is incredible and has truly impacted so many lives around the world.
Thank you to World Eye Cancer Hope Canada and their amazing Child Life Specialist, Morgan Livingstone, for running 30 hours of phenomenal programming.
Finally, mahalo to everyone who joined One Rb World on the virtual livestream and in-person. This event surpassed all expectations because of the wonderful participants – current patients, survivors, families, and medical professionals.
Together, we make a monumental difference!
Dr. Brenda Gallie, ocular oncologist from The Hospital for Sick Children in Toronto, Canada reflects on her experience at One Retinoblastoma World 2024.
Susan Ibarra from St. Jude Global explains the importance of One Retinoblastoma World.
Save the Date!
Please save the date – mid-September 2026 we’ll gather in San Antonio, Texas for the next One Retinoblastoma World Conference.
We’ll head to Sydney, Australia in early September 2027.
Spark Hope: Help Shine the ArcLight to Save a Child’s Life
Early diagnosis is the best cure!
Our speakers highlighted how early detection is vital to save children’s lives.
We aim to provide 500 Arclight ophthalmoscopes across nine low and middle income countries in 2025, and low resource communities in the USA. Please join us in making this possible!
Donate today to equip healthcare workers with life-saving Arclight devices.
Each $25, $50, or $75 gift funds a high-tech solar powered Arclight ophthalmoscope, and training to examine children’s eyes and detect eye cancer early.
This Giving Season, please help us bring the life-saving gift of early detection to children in some of the world’s poorest countries and communities. Together we can save more precious young lives and families. Thank you very much!
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.
Also From Our Blog:
Living With Vision Loss: Challenges and Changing Perspectives
A Milestone Anniversary: Celebrating 30 Years Being Cancer Free
You May Also Like…
Child Life Programs: Play With Purpose at Retinoblastoma Gatherings
Eye cancer is a potentially overwhelming experience for young children, whether patient or sibling. Child life can radically improve care and life for the entire family, but too many children lack access to this specialist support. Abby White shares how WE C Hope supported Child Life programs are helping to change that.
Child Life in Retinoblastoma Care
Child life can profoundly impact a child’s experience of retinoblastoma, and their quality of life. However, many children treated at specialist retinoblastoma centres lack child life support, and their parents feel unsupported, compared with other cancer patients. Abby White explores the challenges and ways to overcome them.
How to Advocate for Child Life Support in Your Child’s Medical Care
Parenting children through retinoblastoma is tough. Being their chief advocate is one of your most important roles throughout their cancer experience. Rb Survivor and WE C Hope CEO, Abby White, discusses why parents and caregivers should advocate for child life support, how to ask for child life services, and how to work effectively with child life professionals for the best outcomes.
4 Reasons Survivors and Families May Not Participate in Retinoblastoma Research, and Ways to Improve Engagement.
Survivor participation in retinoblastoma research is key to understanding long-term impacts of the cancer, and improving care. But many barriers to participation exist Len Burns, a blind bilateral Rb survivor and licensed family therapist, considers four major barriers, and opportunities to overcome them.
Ethnography: A New Frontier in Retinoblastoma Research
Every child with retinoblastoma, parent, sibling, survivor, and medical professional has a story to tell of their journey through childhood eye cancer. Understanding our individual and collective experience empowers us to develop and deliver holistic care for all. Rb survivor and WE C Hope USA Director, Clayonia Colbert-Dorsey discusses the growing field of ethnography research, and how it can positively impact our diverse global community.
How to Communicate with People Who are Blind or Vision Impaired – Part 3: Medical Care and Support
Most children with retinoblastoma and survivors have some degree of sight loss, and many experience awkward healthcare interactions as a result. This 3-part series shares survivor and parent tips for medical professionals working with people who are blind or vision impaired, Part 3 focuses on medical care and support.
Leave a Reply
Want to join the discussion?Feel free to contribute!