Global Eyes: Connect, Communicate and Collaborate for Cure
Monday May 22, 2023
Sharing knowledge and experience, and working together, are vital to build better retinoblastoma care. Rb survivor and WE C Hope CEO, Abby White, highlights two key meetings on the horizon that will unite professionals, scientists, and parents and survivors who live with the impacts of childhood eye cancer, to advance care for all.
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.
Retinoblastoma is one of the most curable childhood cancers, yet children worldwide struggle to access timely, effective care – in both developing and highly developed countries. The reasons are diverse, including limited awareness about common early signs, poverty and its many challenges, geography, and the small number of specialist treatment centres scattered across the globe.
These barriers to cure concern and challenge our dedicated retinoblastoma community. Now, for the first time, two retinoblastoma-focused meetings will take place in under-served regions, tackling some of the most complex issues that limit children’s access to care and cure today. From Kenya’s Indian Ocean shore, to remote mid-Pacific Hawaii, ISOO Africa 2023 and One Rb World 2024 aim to help bring optimal care to all children, no matter where they live in the world.
One Retinoblastoma World
One Retinoblastoma World is a global network with the bold idea that all children with retinoblastoma and survivors can have equal opportunity to access optimal care. When diagnosed early and treated effectively, childhood eye cancer is curable. No child should die, or suffer avoidable blindness because of it.
Many challenges impede scientific research we need to develop evidence based care. One Retinoblastoma World exists to break down those barriers.
The One Rb World Conference gathers together eye and cancer specialists, researchers, parents, and survivors from around the world to pursue the best possible retinoblastoma care for all children and throughout life. Collaborative research, clinical care and family support benefitting the majority of children and survivors can only be developed through inclusive meetings with a real-world focus.
To date, six One Retinoblastoma World meetings have been convened, hosted by different institutions and organizations:
- London, England (2012), hosted by World Eye Cancer Hope UK.
- Toronto, Canada (2014), hosted by Retinoblastoma Program @ the Hospital for Sick Children (SickKids).
- Dublin, Ireland (2016), hosted by the Retinoblastoma Programs of Ireland and Toronto, Canada.
- Washington D.C., USA (2017), hosted by World Eye Cancer Hope USA.
- Virtual (2020). Jointly hosted by the Canadian Rb Society, Canadian Rb Research Advisory Board (CRRAB), International Rb Consortium, and World Eye Cancer Hope USA.
- Virtual (2021). Jointly hosted by World Eye Cancer Hope USA and Dr. Sandra Staffieri, retinoblastoma care co-ordinator at the Royal Children’s Hospital Melbourne, Australia.
One Retinoblastoma World 2023
Since the very successful One Rb World 2020 and 2021 virtual meetings, we’ve been looking forward to convening in person again. The 2023 meeting was to be held in Ottawa. However, early this year, after much discussion among our international planning team, we decided to cancel this meeting so we can best support ISOO Africa.
The International Society of Ocular Oncology (ISOO) plans to hold a major retinoblastoma-focused congress in Africa this year – the first-ever meeting of ISOO on the continent. ISOO Africa 2023 will take place on August 21 – 23 in Mombasa, Kenya.
Key members of our One Rb World 2023 event planning and scientific program team from Canada, the UK and USA are involved in the planning and support of ISOO Africa, as are many of our potential One Rb World speakers and participants. The two meetings would be just 7 weeks apart, creating a significant workload for a few people – most of whom continue to be challenged in their hospital settings by ongoing pandemic effects.
We therefore made the difficult decision to cancel One Rb World 2023 to ensure we can all prioritise retinoblastoma care In Africa without becoming too thinly stretched.
Dr. Kahaki Kimani, Director of the Retinoblastoma Program at Kenyatta National Hospital in Nairobi, Kenya, and co-host of ISOO Africa 2023, uses a Retcam to examine a child’s eyes during an EUA.
Retinoblastoma Care in Africa
Retinoblastoma is an aggressive cancer, but eminently curable. More than 96% of children are cured in developed countries, many with useful vision. Yet it remains a death sentence for most children in Africa.
Imagine a baby with eye cancer, their family unaware of the early warning signs. This precious child is finally diagnosed, but specialist care is far away – perhaps not even in their country. Many challenges prevent or severely delay the child’s treatment, and push the family deeper into poverty. Without support, they abandon therapy, and the once curable child dies in terrible pain.
Now imagine a future where this family can access the medical and supportive care they need, in their own country, in time to save the child’s life – maybe even sight. This is already happening in some African countries, and it’s the future we want for all children and families across the continent.
Well established retinoblastoma programs and partnerships in all regions of Africa show that Rb can be cured despite limited resources, and sight can be saved when children are diagnosed early and families receive practical, compassionate support. But the challenges are great for both families and medical professionals.
ISOO Africa 2023: Building Retinoblastoma Care and Hope
On August 21 – 23, the International Society of Ocular Oncology (ISOO) will host the first meeting of ISOO Africa. Medical professionals and advocates from across Africa and around the world will gather in Mombasa, Kenya to share knowledge and experience, and develop collaborations to advance patient care. ISOO is working on a virtual option for attendees.
ISOO is a non-profit incorporated in Philadelphia, USA, with the mission to advance ocular oncology care worldwide. Through scientific meetings and other activities, they:
- Coordinate with general ophthalmology, general oncology, ophthalmic pathology, and allied sciences,
- Encourage research,
- Improve teaching and technical methods, and
- Improve patient care.
ISOO Africa will take place immediately before the College of Ophthalmology of Eastern, Central and Southern Africa (COECSA) annual conference. This is scheduled for August 23-25 at the same location.
Compared with other eye cancers, Africa has more children with retinoblastoma due to high birth rates and large populations. Many are diagnosed late. Advanced cancer is difficult to treat, with poor chance of saving the child’s life.
Few countries have expertise and resources to save sight when the cancer is diagnosed early. Abandoning therapy is the primary cause of treatment failure in curable children, and psychosocial supports that prevent abandonment are rare.
Retinoblastoma will therefore be the primary focus at ISOO Africa 2023. The program will examine the challenges that cause so many children to die, and practical solutions to overcome them. Sessions will explore scientific collaborations, ocular pathology, early diagnosis, management of advanced cancer, vision-saving opportunities, and psychosocial supports that underpin effective medical care.
The schedule will include lectures from regional and international experts in eye cancer and patient care, case study reviews, and oral and poster presentations from abstract submissions.
A young girl and her father share a giggle during a break at their rural home between chemotherapy for bilateral retinoblastoma. The classic early signs of squint (turned eye) and leukocoria (white pupil) are visible in her eyes.
WE C Hope and ISOO Africa
World Eye Cancer Hope is proud to support the first meeting of ISOO Africa. Our story began in Kenya in 1946, when our founder’s father, John, was diagnosed in Nairobi with bilateral retinoblastoma. In 2004, Abby responded to an email from one desperate family in Botswana, leading to Rati’s treatment in Canada, and the creation of WE C Hope in the UK and Canada. Abby began to receive many requests for help from American families, and WE C Hope USA was founded in response.
We are delighted that retinoblastoma specialists from the UK, USA, and Canada are involved in planning this meeting alongside our colleagues in Africa. As a patient and family advocate organization, we highlighted the need to include psychosocial care in the program. We are ready to join the conversation in Mombasa.
WE C Hope USA President and retinoblastoma survivor, Marissa D. Gonzalez, will travel to Mombasa from her home in Long Beach, California. The cities have been twinned since 2007, and Marissa is delighted to serve as a Long Beach ambassador, learn more about Kenya, and strengthen ties, while helping to advance care for children with the cancer that has so profoundly shaped her own life.
Please Give Hope to Africa’s Retinoblastoma Communoty Today!
WE C Hope is partnering with ISOO Africa. We have already donated $5,000 to meeting costs and sponsorship of African professionals who need financial support to attend. We hope to double our support from $5,000 to $10,000, and invite you to join in this goal. As a community of survivors, families, friends, and advocates, we can stand in solidarity with our friends in Africa, giving hope to thousands of children with retinoblastoma and their families.
Your donation will make a real difference across the continent. With your support, ISOO can help save more children’s lives, advance sight-saving care, reduce treatment abandonment, and create a brighter future for the whole family.
Please give generously today and be a part of this life-saving, sight-saving global effort for Africa’s retinoblastoma families. Thank you so much!
One Rb World 2024
Alongside our support of ISOO Africa, we continue to plan and fundraise for the 7th One Retinoblastoma World Conference, which will take place in Hawaii, October 15 – 17 next year. We look forward very much to welcoming medical professionals, retinoblastoma survivors, young patients and family members for three days of programming, community and collaboration in the heart of the Pacific.
One Rb World 2024 will be hosted by World Eye Cancer Hope USA, and organized together with Dr. Sandra Staffieri, retinoblastoma care co-ordinator at the Royal Children’s Hospital Melbourne, representing our retinoblastoma community in Australia.
Our 2021 conference was to be held in Honolulu, Hawaii, immediately preceding the International Society of Pediatric Oncology (SIOP) world congress. Due to the continuing COVID19 pandemic, international travel restrictions, global disparities in vaccination access, and safety concerns, the meeting was held 100% virtual to prioritize everyone’s health and wellbeing.
SIOP will finally host the 2024 congress in Hawaii, and we are delighted to do the same. We plan to offer a virtual component so our worldwide community can join.
As always, we will discuss aspects of awareness raising and early diagnosis, medical care, psychosocial supports, and survivorship. Due to the mid-Pacific location, our 2024 program will particularly focus on key challenges affecting remote and rural communities and small populations around the world, and practical solutions that can improve care for children and families in these areas, and support the professional who serve them.
We look forward to sharing the registration portal and our group’s hotel booking details by early Summer 2023, and do hope very much to see you in Hawaii!
Sponsorship and partner opportunities are available for businesses, foundations and individuals. If you are interested in partnering with us to help host this important forum for global collaboration to improve patient care and cure, please email Marissa Gonzalez at marissa(at)wechope.org.
To learn more about One Rb World, please visit the following pages.
You May Also Like…
One Rb World 2021: Planning, Creating, Sharing and Raising Hope Together
On 1-3 October, we hosted a hope-filled One Rb World 2021 meeting. Planning and hosting is always an adventure, and the 6th One Rb World was especially so! Co-Chairs, Dr. Sandra Staffieri PhD, Rb Care Co-Ordinator, Royal Children’s Hospital, Melbourne, Australia, and Marissa Gonzalez, Bilateral Rb Survivor and President, World Eye Cancer Hope USA, share behind-the-scenes insight and conference highlights.
One Rb World 2020: Inspiring Global Support, Research and Action.
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.
Reflecting on One Rb World 2017
Washington D.C. hosted the 4th One Rb World meeting on October 9 – 11, 2017, including the first US National Family & Survivor Day. WE C Hope USA President, Marissa Gonzalez, reflects on her experience planning and hosting the event, and what the One Rb World community means to her.
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.
About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.
Leave a ReplyWant to join the discussion?
Feel free to contribute!