Beyond Borders: Retinoblastoma in Africa and the Pacific
Monday December 18, 2023
We recap a highly successful first conference in Africa for the International Society of Ocular Oncology, and look forward to One Retinoblastoma World 2024 in Honolulu, Hawaii. With One Rb World meeting co-chairs:
Dr. Jesse L. Berry, Director of Ocular Oncology and the Retinoblastoma Program, Children’s Hospital Los Angeles, USA.
Dr Sandra E. Staffieri PhD, Retinoblastoma Care Coordinator and Clinic Orthoptist/Research Fellow, Royal Children’s Hospital Melbourne, Australia.
Marissa D. Gonzalez, President & Founding Board Member, World Eye Cancer Hope USA.
Marissa Gonzalez (WE C Hope USA) and Dr. Jesse L. Berry (Children’s Hospital Los Angeles) are excited to focus on retinoblastoma at ISOO Africa, and promote One Rb World 2024.
The Ocular Oncology World Comes to Africa
In August 2023, members of the International Society of Ocular Oncology (ISOO) traveled to Africa for the first time since the organization was founded. This historic meeting, led by ocular oncologists Dr. Didi Fabian (Israel) and Dr. Laurence Desjardins (France), was held in Mombasa, Kenya, immediately before the annual meeting of COECSA – the College of Ophthalmology of Eastern, Central and Southern Africa.
ISOO Africa brought together medical professionals, researchers, survivors, caretakers, and non-profit organizers from more than 50 countries to discuss the state of ocular oncology in Africa, and practical ways to improve patient outcomes.
WE C HOPE was delighted to sponsor six medical professionals to attend the meeting from across Africa. Funding travel costs ensured more clinicians on the frontline of retinoblastoma care could participate. This important collaboration of WE C HOPE with ISOO highlights the commitment of both organizations to improve retinoblastoma care globally.
Over the three-day meeting, there was significant focus on retinoblastoma. Speakers presented on the state of care in various African countries, and sessions emphasized collaboration and program building. We also explored opportunities in Africa to implement patient care advances that emerge from research around the world.
There were several informative retinoblastoma keynotes. Dr. Brenda Gallie from Toronto’s Hospital for Sick Children (SickKids) discussed how Africa has the capacity to move care forward on the continent, with global support and encouragement. Dr. Francis L. Munier of Jules-Gonin Eye Hospital, Switzerland, spoke on intravitreal and intracameral injections of chemotherapy for patients.
St. Jude Global (part of St. Jude Children’s Research Hospital) led a capacity building workshop. The session focused on identifying available resources in Africa, and how partnership with countries outside Africa can aid African countries in advancing care. Topics ranged from provision of consultations to discuss diagnosis and therapeutic options for patients, to tangible resources like access to DNA sequencers – necessary for genetic testing.
WE C Hope was founded because of one child from Botswana who travelled to Canada for care. Many desperate families seek treatment beyond Africa. WE C Hope co-founder, Abby White, spoke on the factors affecting care for these children and families, and how they might be addressed. Her own father, born in Kenya and diagnosed with bilateral Rb in Nairobi, was treated in England.
A special part of every ISOO meeting since 2015 has been the gathering of WOOs — Women in Ocular Oncology. The WOOs joined together again for a seaside lunch sponsored by Castle Biosciences, and spoke about the power of mentorship and not letting criticism dictate your actions.
17 WOOs (Women in Ocular Oncology) enjoyed the opportunity to reconnect in person as they dined on a spread of local Kenyan favorites beside Mombasa’s Indian Ocean.
The medical program and intentional focus on Africa was enormously successful, and there was also time for fun and relaxed networking. From local dancing and music at the opening reception, to a moonlight gala dinner on the Indian Ocean, Mombasa was a lovely location for the event.
Local Kenyan dancers thrill the ISOO Africa crowd with a wonderful performance.
Dr. Jesse L. Berry, Vice President and President elect of ISOO, said:
“This was a pivotal meeting for our society. ISOO is an international society and, as such, we aim to support clinicians and researchers focused on ocular oncology around the world. It is clear that the impact we can have by being in Africa is amplified and multiplied.
It was an honor to learn from our African colleagues, and to be part of the future of collaboration on this gorgeous continent. ISOO will proudly work to have an increased presence in Africa — and globally — for the doctors and patients with retinoblastoma and other eye cancers.”
A Global Impact
Dr. Helen Dimaras, a scientist at SickKids Toronto reflected on the initial meetings in Africa to develop the Kenya National Strategy for Retinoblastoma (KNRBS). She said:
“Dr. Kahaki Kimani was the leader of the Kenyan Rb Strategy, but it involved all the patient, clinical, and research stakeholders in the country, along with some professionals from the Rb Program at SickKids, and Daisy’s Eye Cancer Fund Kenya/UK/Canada charity members (Daisy’s Eye Cancer Fund is now World Eye Cancer Hope).
The first KNRBS meeting was in 2008, and the last one in 2015. All the success in Kenya with Rb was due to the teamwork of health professionals, researchers, and patient families. We worked hard to document the status of Rb in the country when we started, so we knew how to measure our success.
This data showed us that we managed to improve over the years to diagnose babies earlier, and apply standard treatment. However, the effects of social determinants still prevail, so in an environment of deep inequities, there is a need for local innovation to optimize diagnosis and treatment.”
Dr. Ifeoma Ezegwui, a pediatric ophthalmologist and professor at the University of Nigeria, was thankful for the event and its opportunities. She reflects:
“The ISOO Africa meeting was very impactful. I learned a lot about current practices in managing retinoblastoma and the global efforts at reducing the incidence [of late diagnosis and advanced disease/death].
It also opened the door to seek collaborations because when you walk alone you don’t go far, but when you walk with others, you walk longer. It was good the meeting was held in Africa because it gave an opportunity for many of us from Africa to participate. The travel costs would have been more expensive if the meeting was outside the continent.”
Dr. Ifeoma Ezegwui smiles with Marissa Gonzalez, her mother Marty and two other conference delegates.
Know the Glow (KTG) co-founder and international advocate, Megan Webber, attended and presented on the organization’s work. She was inspired by the amazing medical professionals she met and says:
“KTG was honored to stand beside WE C Hope and the amazing attendees at ISOO Africa this summer. Hearing reports from countries across the continent, the whole KTG team was profoundly impacted by the need for early detection.
We have made a commitment to run a permanent awareness campaign in the region, which will run behind the scenes even as KTG’s other awareness initiatives continue to span the globe. Partnering with WE C Hope and the ArcLight Ophthalmoscope, we hope to triangulate efforts to aid awareness, early detection and referrals to help ensure that tomorrow’s children find a more direct and supported path to care.
While the ISOO conference made plain the urgent need for greater coordinated efforts, it also highlighted the incredible results that such collaboration could make possible. We are more excited than ever to work alongside tremendous partners and passionate doctors as we work to eliminate preventable blindness and loss of life due to late-stage presentation of retinoblastoma.”
Child Life Specialists at ISOO Africa
Child life programming was a well-received topic at ISOO Africa with child life specialists (CLS) from Canada, Kenya, Ghana and South Africa in attendance.
Martha Kaimuri who works at Moi Teaching and Referral Hospital/Shoe4Africa Children’s Hospital in Eldoret, Kenya said:
“This was a great opportunity to interact with the multidisciplinary team and emphasize the role of child life in management of eye cancer. Coming from an African country, several challenges are associated with cancer like witchcraft, issues to do with finances and ill-equipped hospitals.
All these obstacles pose psychosocial problems, an area that was well-explored during the group discussions. It was evident there is need for support, education and advocacy, a key role played by CLS. There are very few CLS in Africa, however, which made me realize my continent’s need for them. This was a fruitful conference!”
Martha Kaimuri presents on child life in Kenya for children with Rb.
Jonita Ntlhaile, a South African child life intern at MTRH/Shoe4Africa Children’s Hospital in Kenya, also found the conference impactful, saying:
“In August 2023, I was fortunate to start my child life internship in Kenya under the supervision of Canadian CLS Morgan Livingstone and Kenyan CLS Liz Kabuthi. After three years of attempting to move [from virtual training] to an in-person internship, we were finally lucky enough to start it with the first ISOO Africa conference.
We were able to increase our knowledge and understanding of retinoblastoma, as well as treatment and challenges in Africa. This was a world-class event, where Morgan and Martha presented on the amazing work they do with retinoblastoma patients in Canada and Kenya, respectively.
As a South African, seeing the impact of child life care on retinoblastoma patients and families fueled my passion for the work that I will continue in my internship and future career. My hope is that, through this conference, various African countries will be willing to open their doors to child life in their facilities after seeing its positive impact. It was an honor to be at ISOO and represent child life in South Africa.”
Morgan Livingstone (WE C Hope Canada), describes her poster presentation, with Marissa Gonzalez (WE C Hope USA).
One Retinoblastoma World Says Aloha in 2024!
From the Indian Ocean to the Pacific, WE C Hope is thrilled to continue the wonderful momentum created at ISOO Africa. Meeting in Honolulu, Hawaii from October 15 – 17, 2024, WE C Hope USA will host the 7th One Retinoblastoma World conference in collaboration with our colleagues in Australia – a truly cross-Pacific partnership.
Our scientific program co-chairs are retinoblastoma specialists Jesse Berry (Children’s Hospital Los Angeles), Dr Sandra E. Staffieri PhD (Royal Children’s Hospital, Melbourne), and Maura DiNicola (Bascom Palmer Eye Institute, Miami). While the entire meeting is expertly planned and coordinated by Marissa D. Gonzalez, bilateral Rb survivor and President of WE C Hope USA.
In 2021, we overcame many challenges the COVID-19 pandemic thrust upon us, and held the 6th One Rb World Conference virtually. Since first live-streaming the event in 2017, we know that online access extends knowledge, connection and collaboration to all corners of the world. However, nothing can replace the power of immediate, present human interaction at the heart of the One Rb World experience.
For example:
- With virtual format, children cannot truly interact and benefit from the child life program.
- Small group sessions are less practical and effective online, while in-person small group sessions cannot be streamed or recorded due to the costs involved.
- Time zones present a significant virtual challenge.
- Communication, which is at the heart of One Rb World, is impacted virtually.
- The many opportunities for personal connection, networking, and quiet support, both during sessions and in social time throughout the event, are lost online.
- In 2017, we did not stream family/survivor day sessions, or make them available after the event, respecting participant privacy. We strive to create a safe space for our community, especially on this day of the program. Some aspects of Family/Survivor Day therefore can only be experienced in-person, or in real-time in virtual format, and will not be available to view in our sessions hub after the event.
We have missed being together in person very much!
Participants in discussion during a small-group activity at One Rb World 2017. The map seen in the backgroun documented the countries represented by our attendees. The event was live-streamed, making the event more accessible to professionals, parents, and survivors worldwide.
So we are excited to finally gather in Hawaii and hold the 2024 conference in a hybrid format. One Rb World will be available in-person in Honolulu, and online around the world. Once again, families, survivors, clinicians, researchers, and others can participate in the three-day programming, or watch and contribute to it remotely.
One Rb World will take place immediately before the 56th world congress of the International Society of Paediatric Oncology. The most important global conference among childhood cancer professionals, this event attracts over 2,500 oncologists, surgeons, psychologists, nurses, researchers, parents, survivors, nonprofit leaders, and other advocates from around the world for four days of extensive programs and networking.
Parents / survivors sessions run throughout, with full access to the professional program, as well as several social events uniquely for parents and survivors. This is an unrivalled opportunity for networking, parent/survivor advocacy, and knowledge-building, and to fly the flag for retinoblastoma within the global childhood cancer community.
We look forward to sharing a session with SIOP during our One Rb World meeting – see below for more details.
Day One – Family Day
Retinoblastoma affects more than the eye. It impacts the whole child, their parents, siblings and extended family, and the adult survivor and their family. So this day will be all about retinoblastoma families and survivors.
We will schedule sessions to discuss:
- Family/survivor-initiated research and how to participate in clinical research. What are the considerations from the perspective of the parent, the survivor, and the clinician?
- What do we need for accessible and inclusive research to happen?
- Research funding is competitive and even more so for a rare disease like retinoblastoma – both as a cancer and an eye disease. How can we leverage philanthropy to support the research we so urgently need for retinoblastoma – in the acute phase of treatment and in survivorship?
- Enrolling your child or yourself in clinical research can be a complex journey. Understanding the technical process of research can support one’s decision-making to participate.
- What is new in genetics and genetic testing? How can we bring this critical component in retinoblastoma management and treatment equitably around the world? And what if the genetics are not fully informative?
Days Two and Three – Medical Advancements
Clinical Trials, Patient Research, and New Therapies
As research continues to advance, such as chemo plaque and other budding treatments, the Children’s Oncology Group Clinical Trials aim to better understand treatment outcomes. From the required number of intra-arterial chemotherapy cycles and aqueous research to the lived experiences of patients, parents and survivors. We will look at how research guides treatment decisions, with the goal of achieving the best outcomes for individuals, and explore the latest progress in retinoblastoma research.
Genetics
Genetic testing is evolving faster than we could have imagined when the RB1 gene was first cloned in 1986 – the first major genetic breakthrough among all cancers! We will provide an overview of retinoblastoma genetics and how new discoveries can support management and surveillance.
Treatment Decision-Making
At diagnosis or relapse, parents are often provided with complex information that they will have little time to process and consider – yet are expected to make informed decisions that are best for their child. We will explore clear understanding of high-risk pathology, and how we can ensure parents receive all the information they require to make an informed decision, rather than being advised “only one treatment is available”.
Awareness, Referral, and Early Diagnosis
We know that awareness of retinoblastoma’s early signs are essential for survival. Many centers and non-profit organizations around the world have implemented strategies to improve awareness and achieve this goal. We will learn from others’ successes, and examine how we might replicate the same programs in our individual corners of the world.
The ArcLight is changing the world! This low-cost, high tech ophthalmoscope is being rolled out in low and middle income countries to great effect, revolutionizing the potential to diagnose retinoblastoma early in low-resource settings. We look forward to sharing an update on how this simple device is improving children’s diagnosis and in turn, their survival.
Rb and Global Health
As the most survivable of all pediatric cancers, retinoblastoma has been selected as one of six index cancers by the World Health Organization (WHO). Index cancers help the WHO and its partners evaluate progress in diagnosis, care provision, and patient outcomes, and identify where needs are highest – both geographically, and within healthcare systems and patient support structures.
In a joint session with the International Society of Paediatric Oncology (SIOP), we will hear about the activities the organization has supported over the last two years to improve timely diagnosis of retinoblastoma. Their central focus is on educating health professionals for early detection, and developing referral pathways to care.
SIOP Oceania, one of the SIOP continental branches, is actively developing in-country capacity for children, so they can be diagnosed early and receive treatment in their own country, surrounded by familiar support networks of family, friends and culture.
However, sometimes in-country care is not possible, as not all the resources will be available that the child may require. It is therefore critical to develop clear, sustainable referral pathways for children to receive out-of-country care, and support for their family throughout their treatment. We will explore how our global community can work together to achieve swift, continuous treatment and follow up care for these children and families.
Psychosocial Health and Child Life
As always there will be interactive child life programming throughout the entire three-day event. This program is open to all children of retinoblastoma families in attendance, including siblings and children of adult survivors. The main conference program will also include sessions exploring the critical importance of family and child psychosocial support during treatment and the years beyond.
Survivorship
Curing retinoblastoma is not enough – its impact is felt throughout one’s life. We will explore aspects of life beyond treatment, how we can understand more about these impacts, and survivor needs. With knowledge, we can identify potential changes in treatment and support during the child’s eye cancer treatment, and shape lifelong support and medical care.
Dual Focus
Throughout the program, every session will be comprised of two parts:
- A family/parent/survivor focus
- A medical focus
The family / parent / survivor focus will explore real-world applications of topics, whilst the medical focus will provide context and evidence-based information.
Clinicians, researchers, survivors and parents, we all learn from each other, and together we will improve outcomes – no matter where you live in the world.
Child life specialists Morgan Livingstone (Canada), Augusta Asiedu-Lartey (Ghana), Martha Kaimuri (Kenya), and Jonita Ntlhaile (South Africa).
Two Meetings, One Goal
Thank you to the International Society of Ocular Oncology for a wonderful meeting in Kenya. We are excited to continue this momentum as we prepare for the 7th One Retinoblastoma World conference, joining the global community of the International Society of Paediatric Oncology in Hawaii.
We are energized to include and hear from countries around and across the Pacific, and particularly to involve local Hawaiian medical professionals, patients, survivors, and their families. We look forward very much to welcoming you to Honolulu in October!
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One Rb World 2020: Inspiring Global Support, Research and Action.
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WE C Hope at the SIOP World Congress 2016
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About the Authors
Jesse L. Berry, MD is Vice Chair for Academic Affairs for the Department of Surgery, and Director of Ocular Oncology, at USC and the Vision Center, CHLA. She is Associate Professor of Ophthalmology, Clinical Scholar at USC, and currently holds the CHLA A. Linn Murphree, MD Chair in Retinoblastoma, and the USC Berle & Lucy Adams Chair in Cancer Research.
As a physician-scientist, Dr. Berry treats patients with retinoblastoma and other ocular tumors, and studies outcomes for patients. She was awarded a K08 in 2018 and R01 in 2023 from the National Cancer Institute of the National Institute of Health to further study the aqueous as a liquid biopsy for retinoblastoma.
Dr. Berry is Vice President for the International Society of Ocular Oncology, and was conference chair for the 2019 biennial ISOO meeting in Los Angeles. She advocates for mentorship and opportunities for young ophthalmologists; she is a member of the Young Ophthalmologist committee through the American Academy of Ophthalmology and co-leads the committee for young ophthalmic oncologists and pathologists (YOOPs). She is active within the Women in Ophthalmology organization and founded WOO, Women in Ocular Oncology.
Sandra Staffieri is the Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital (RCH) Melbourne, Australia. Working at the RCH and in private clinics, she has over 35 years’ experience in children’s eye health and disease.
As a Research Fellow and Clinical Orthoptist at the Centre for Eye Research Australia, Sandra completed her PhD on delayed diagnosis of retinoblastoma. Her prime focus was to develop and evaluate an information pamphlet for new parents to raise awareness of the important signs of childhood eye disease – particularly strabismus and leukocoria – in the hope this could lead to earlier diagnosis.
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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.
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