One Retinoblastoma World 2020: Inspiring Global Support, Research and Action.
Monday November 23, 2020 (updated April 28, 2021)
In October, a diverse community of survivors, families and medical professionals came together at One Retinoblastoma World for two days of inspiring panels, research and calls to action. WE C Hope USA President Marissa D. Gonzalez shares a recap of the fifth global conference, and her vision for next year’s event in Hawaii.
Ottawa, Canada was the backdrop for the One Retinoblastoma World 2020 conference, which was held virtually on October 3-4, 2020. Registrants and panelists from 40 countries on six continents gained invaluable knowledge, networked with fellow conference participants, and learned from experts in the retinoblastoma field.
A huge thank you to our local hosts, the Canadian Retinoblastoma Research Advisory Board, the International Retinoblastoma Consortium and the Canadian Retinoblastoma Society – your dedication to One Retinoblastoma World 2020 made this conference possible!
Dr. Helen Dimaras, Director of Global Eye Health Research at The Hospital for Sick Children, Toronto, World Eye Cancer Hope Canada Team Member, and conference organizer, discussed some of the achievements of the virtual event:
“The chance to host One Retinoblastoma World in Ottawa provided the opportunity to showcase the strong patient engagement in research taking place in Canada, even though the pandemic forced the conference to proceed online. The conference sessions were co-chaired by patient and non-patient experts, and lived experience was showcased alongside scientific discoveries – in every panel – to provide a comprehensive overview of retinoblastoma.
Virtual networking sessions saw ophthalmologists in Nigeria speaking with survivors in Australia; mothers from Kenya speaking with survivors in Canada. The children’s program took center stage as a featured part of the program, rather than complementary, allowing adult participants to catch a glimpse of child life in action. The positive outcome of the virtual event was that it might just have been our most global conference ever, with participation of more than 250 people from 40 countries.”
Session topics ranged from the psycho-social aspects of retinoblastoma to genetics, from vision to new treatment guidelines. Lived experience played a key role in each session, bringing the survivor and parent perspective to the forefront, while medical professionals from Brazil, Ghana, Australia, Denmark and beyond brought a truly global context.
Survivorship and Second Cancer Screening
The Survivorship and Second Cancer Screening panel informed participants about the importance of being a self-advocate in your adult retinoblastoma journey. Dr. David Freyer from Children’s Hospital Los Angeles discussed the benefits of enrolling in a Life Cancer Survivorship program and obtaining genetic information about your individual retinoblastoma case in order to make informed medical decisions.
Unilateral retinoblastoma survivor Clayonia Colbert Dorsey shared her experience of finding an Rb community as an adult at the One Retinoblastoma World 2017 conference in Washington D.C., This global network of friends, medical professionals and supporters has had a significant positive impact on her life.
Ocularist Matthew Milne from Toronto shared the unique role an ocularist plays in the life of both a pediatric and adult survivor. They often work with patients over many years, helping them gain confidence in their appearance.
As the moderator for this panel, I was honored to be able to bring such important topics to the international survivor community. Being able to educate both medical professionals, parents and survivors about the journey we adult RB survivors travel is a privilege, and something so near to my heart.
No resources like this conference or a group focused on survivorship existed when I was going through treatment for retinoblastoma, and my mother had no idea what to expect as I got older.
Awareness and Early Diagnosis
The Awareness and Early Diagnosis panel presented vital information for raising awareness of retinoblastoma. Dr. Sandra Staffieri from the Royal Children’s Hospital, Melbourne, discussed awareness campaigns in Australia. She stated, “If you tell them, they will know. Educating parents to recognise the early signs of retinoblastoma – a white pupil or a turned eye – is the first step to early diagnosis and better outcomes for our children.”
Paula Dillon, parent of a retinoblastoma survivor said, “Education that goes with the awareness campaign has the potential to improve outcomes.”
Nairobi native Isabel O. Amimo shared her daughter Chloe’s retinoblastoma story, and discussed the importance and impact of awareness in Kenya, where families often do not seek medical care early due to the costs involved.
Dr. Sidnei Epelman from the Santa Marcelina Hospital in São Paulo, Brazil reviewed the challenges to early detection in Brazil. She highlighted the challenges for families living in the Amazon, where just reaching a hospital can be a multiday trip.
Dr. Ashwin Mallipatna from Toronto’s Hospital for Sick Children talked about the importance of a red reflex test for all babies to detect retinoblastoma.
Retinoblastoma Treatment Guidelines and New Treatments
In the Retinoblastoma Treatment Guidelines and New Treatments session, we learned from four amazing women. Leslie Low, mom of triplet retinoblastoma survivors, shared her stunning experience with three babies who had cancer. She highlighted many photos of Thomas, Luke and Mason from infants, all the way through their current happy and healthy lives. Leslie is an RB Warrior Mom for sure!
Dr. Vera Essuman from Korle Bu Teaching Hospital in Accra, Ghana, gave a presentation on the establishment of a national strategy for Retinoblastoma in Ghana. She discussed the need, goals and objectives, achievements so far, and the next steps to improve survival, vision outcomes and support for children in West Africa.
Dr. Brenda Gallie from The Hospital for Sick Children in Toronto, Canada, shared her expertise about new developments in retinoblastoma treatment options. She focused on the Stage of retinoblastoma at diagnosis, roles for treatment, the process for development and implantation of new treatments, and team care.
Dr. Katherine Paton from Vancouver, Canada explored the question of “What Are Medical Guidelines?” Evidence Based Guidelines were adopted from the scientific field into medicine with the goal of following scientific knowledge to improve patient care. The field has evolved in the last 20 years, with formal rules and organizations.
Some examples of adopted retinoblastoma guidelines are the Kenya National Retinoblastoma Strategy and the Canadian Guidelines for Care.
Dr. Jesse Berry answers an audience question during the Genetics session, while fellow panelists listen.
Retinoblastoma Genetics
The Retinoblastoma Genetics session highlighted a plethora of topics. Dr. Helen Dimaras explained what causes retinoblastoma. She explained that “genes make up the ‘recipe’ of life. Cancer is a disease of the genome. Retinoblastoma is generally caused by inactivation of a gene called RB1. A rare form of retinoblastoma is caused by amplification (i.e. to many copies) of a gene called MYCN.”
Retinoblastoma survivor and genetic counselor, Melissa Mills, talked about the chances of passing on retinoblastoma to your children if you have a heritable form. She said “the chances if one parent has this form is 50%, and the chances with two affected parents is 2/3, or 66.67%.”
Dr. Lucy Njambi talked about experience of delivering genetic services in Kenya from a doctor’s perspective. She highlighted key challenges, such as no genetic counseling unit, training or counselors, lack of genetic testing services, limited knowledge and skills, overworked doctors with limited time, and the resulting need for frequent, costly examinations under anesthesia due to lack of genetic testing.
Dr. Njambi shared the patient perspective in Kenya, which is often affected by self-blame, denial, late presentation, poor follow up and financial constraints. The ability to convey knowledge to families is affected by educational/religious/cultural diversity, translation of complex genetic information into local dialects, the mother’s role in the community, and the father’s or clan’s community dominance.
Dr. Jesse L. Berry of Children’s hospital Los Angeles presented new research on the development of the aqueous humor as a liquid biopsy for retinoblastoma. As she explained “Retinoblastoma cannot be biopsied due to concern for extraocular tumor seeding”. But she poses the question “With safe access to this aqueous humor, can we use this ocular fluid as a surrogate to tumor biopsy or liquid biopsy for retinoblastoma?”
Laura Kelly, a retinoblastoma survivor from Nova Scotia, Canada, shared her memories of retinoblastoma, and how it has shaped her life. Retinoblastoma is not just an eye cancer of childhood – it has lifelong impacts, risks and implications.
Child Life
World Eye Cancer Hope’s Child Life Specialist, Morgan Livingstone, led children, parents and many other conference participants in activities during two child life sessions. With almost two decades of Rb child life experience, Morgan led the first formal three-day child life program at the 2017 One Retinoblastoma World conference in Washington D.C. That conference became the catalyst to expanding this important program worldwide during this year’s event.
Morgan also gave an engaging child life presentation, focused on empowering parents of children with retinoblastoma to offer personalized support. She offered strategies that help prevent, manage and reduce fears, worries and anxiety related to hospital visits and treatments for children of all ages with retinoblastoma. Self-care strategies for parents were also explored to help manage the very normal fears and worries families face during early childhood cancer treatment
Watch the One Rb World Sessions
Use the button in the top right corner of the video panel to move between sessions in this playlist.
An Event Well Done!
I am so proud of the work that went into the planning and execution of this year’s conference. The global pandemic did not deter the commitment of our panelists, nor our conference registrants.
I’ve been inspired to witness the conference grow in size, scope and content, from my first attendance of Dublin in 2016, to Washington D.C. in 2017. We hosted our largest attendance to date in this truly challenging 2020 year – that is a testament to the strong and resilient retinoblastoma community around the world. It also highlights the great need for this conference to continue as a globally accessible event.
Aloha One Retinoblastoma World 2021!
The 2021 One Retinoblastoma World conference was scheduled to take place in Honolulu, Hawaii, preceding the International Society of Pediatric Oncology (SIOP) world congress. Due to the ongoing COVID-19 pandemic, both the SIOP2021 congress and One Rb World will again be held 100% virtually to ensure everyone’s health and safety. One Rb World will take place online October 1 – 3, 2021.
We are very sad that we will again be unable to meet in person, but delighted that the 6th One Rb World conference can occur virtually, building on the momentum from Canada’s virtual event. We are reviewing post-conference surveys submitted by the attendees, and suggestions from our community for potential topics to be included in the 2021 program.
We look forward to partnering with our friends in Australia and Pacific Rim countries to bring this conference to the region and the world. I am personally excited to plan another One Retinoblastoma World conference with our amazing USA board and scientific program co-chairs Dr. Jesse L. Berry from Children’s Hospital Los Angeles, and Dr. Sandra Staffieri from the Royal Children’s Hospital in Victoria, Australia.
Thank you to all of the sponsors, panelists and participants of One Retinoblastoma World 2020. We can’t wait to say Aloha to you all at our 2021 event!
Help Make Global Access a Reality in 2021
Our Giving Tuesday campaign this year benefits the virtual component of One Rb World 2021. Whether or not we can convene in Hawaii, we plan to include virtual participation to ensure global access. $50 will help us bring the vital cancer knowledge, support and collaboration for best care to one more family, survivor, or medical professional. Please help us make access a reality for all this Giving Tuesday. Click below to learn more about the campaign, make a donation, or start your own fundraising page. Thank you so 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. In her downtime, Marissa enjoys travelling and going to Disneyland.
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