Early Diagnosis
Defeating childhood cancer begins with awareness, understanding and action. We promote three annual campaigns raising awareness of retinoblastoma and childhood cancer.
World Child Cancer Day (Feb 15): raises awareness of childhood cancer and its impact worldwide, and encourages families and childhood cancer communities in developed countries to help affected families in less developed countries.
World Retinoblastoma Week (May): focuses on achieving early diagnosis through awareness of white pupil as the most common early sign of this cancer, and increasing understanding of global issues in care for children, families and adult survivors..
Childhood Cancer (Gold Ribbon) Month (September: promotes awareness and understanding of childhood cancer and survivor issues, and support for childhood cancer organizations to improve care for children, survivors and their families.
In Autumn 2023, WE C Hope, through our US chapter, began partnering with Know The Glow, a California nonprofit dedicated to glow awareness, and The Arclight Project, a social enterprise based at the University of St Andrews in Scotland, to bring education and affordable eye screening tools to the world.
WE C Hope USA donated 300 Arclight ophthalmoscopes to 6 countries, increasing access to life and sight-saving frontline eye care for children across Africa and Asia. WE C Hope UK will support the continued, expanding international partnership beyond 2024.
Read more from our blog:
Early Diagnosis is the Bedrock of Retinoblastoma Care
Rb survivor and WE C Hope CEO, Abby White, explores common reasons for delayed diagnosis, four pillars needed to achieve routine early diagnosis, and how our One Rb World community is united in this goal.
The Arclight and Fundal Reflex Test: Shining the Light on Retinoblastoma
Dr Andrew Blaikie, ophthalmologist and clinical lead for the Arclight Project at the University of St Andrews, describes the importance of a simple eye exam, and how the Arclight improves eye health access and outcomes for children with eye cancer around the world.
Pearls of Light: The Pathway to Retinoblastoma Early Detection
KnowTheGlow founder, Megan Webber, and WE C Hope USA President, Marissa D. Gonzalez discuss how our early detection partnership evolved, and update on the progress we’re making for children in Africa and Asia.
Supporting Families and Survivors
Information and rapid access to appropriate care are vital to save children’s lives and sight, minimize family distress and protect physical and mental health. We support families and survivors around the world as they seek and receive care.
Retinoblastoma Resource: We share comprehensive high-quality information about many aspects of the life-long retinoblastoma journey. Sections are written specifically for families, survivors, friends & relatives and clinicians.
Facebook Groups: We moderate a number of closed Facebook communities for those affected by retinoblastoma and those who care for affected individuals and families.
International Patient Care
We began with the funding of international care for one child, Rati from Botswana. Since 2004, WE C Hope UK has directly supported hundreds of families around the world who struggled to access diagnosis, treatment or ongoing care in various ways. These include:
- Uninsured children and survivors.
- Families in conflict zones, from Afghanistan to central Africa.
- Families at Gaga (Chad) and Dadaab (Kenya) refugee camps, and the US/Mexico border.
- Children treated internationally, whose families could not meet the cost of ongoing follow-up care.
- Families in the midst of international or cross-country care when impacted by pandemic travel restrictions.
We continue to receive many contacts from families and survivors around the world seeking support, particularly those facing challenges before, during, or after international treatment.
WE C Hope cannot fund individual patients. We must focus our limited funds on programs that can make a lasting positive impact for many. Attending to individual families, advocating for effective international patient care, and supporting growth of specialist in-country programs are key focus areas for WE C Hope UK.
In 2023, Abby, our founder and volunteer CEO, was invited to speak on international patient care at ISOO Africa – the first continental meeting of the International Society of Ocular Oncology, held August 19–21, 2023 in Mombasa, Kenya. Here is her pre-recorded talk.
Read more from our blog:
Planning Your Child’s Eye Cancer Care: A Step-by-Step Guide to Confident Treatment Decisions
WE C Hope offers a comprehensive step-by-step guide to help parents navigate the complex, highly-emotive treatment planning process, so they can make the best decisions at every stage of their child’s eye cancer journey and minimize stress.
Social Media Support: 7 Ways to Respond Effectively, and Why Our Responses Matter
How we respond to one another in Rb support forums, and the information we share, can significantly impact patient care and outcomes. Abby White shares 7 ways we can improve communication, support, and best care for the child, survivor and family.
International Care: Challenges and Opportunities
Families and medical professionals worldwide seek retinoblastoma care at centres beyond their home country. Many families contact WE C Hope for help before, during or after such treatment. Abby White explores the challenges they experience and what can be done to help improve outcomes for the child and family.
Rati’s Challenge
Through the dedication of many people, Rati had the best last chance possible, but expert care came too late. Multiple opportunities to save her life in Africa were missed, and her death was preventable. When she died in August 2006, our UK and Canadian chapters created “Rati’s Challenge” to address the needs of families affected by retinoblastoma in Africa.
Partnerships grew quickly from visits to Kenya in November 2006 and 2007. Abby’s father was born in Kenya, and diagnosed with bilateral Rb in Nairobi in 1946; and Abby had worked in Kenya during a university gap year. 25% of sub-Saharan Africa’s ophthalmologists also train in Kenya. This was a good place to begin.
The Kenya National Retinoblastoma Strategy was officially launched in September 2008. The National Strategy includes awareness education and early detection initiatives, medical training, telemedicine, personalized care, and family support.
Together, the KNRbS and WE C Hope have increased awareness, streamlined care, and enhanced family support, raising survival of Rb from 26% in 2008 to 70% today.
The Kenyan Strategy serves as an adaptable model that can be implemented in diverse regions of the world to enhance systems, resources, and patient care.
Read more from our blog:
From One Child to One Rb World: WE C Hope for Retinoblastoma Care
Daisy’s Eye Cancer Fund was founded to help one little girl access vital cancer care. Abby White reflects on what happened after Rati died – our journey to the Kenya National Rb Strategy, World Eye Cancer Hope, One Rb World, and advocacy for all children, survivors and families.
Perfect Vision: Care and Cure for Children with Eye Cancer in Developing Countries
Retinoblastoma is highly curable with early diagnosis and appropriate care. But 90% of affected children live in developing countries, and globally, most do not survive. Abby White explores key challenges to cure, and some ways to overcome them.
United Against Retinoblastoma: The Importance of Global Data and Collaboration
Understanding Rb is critical to improve diagnosis, care, and outcomes. Mattan Arazi, M.D and Ido Didi Fabian, M.D., MPH, world-focused eye doctors from Sheba Medical Centre, Israel, explore why global data and collaboration are vital in Rb research, and the progress they bring to all.
Child Life Training and Programs
Through our Kenya partnership, the Kenya Child Life Training Program was established in Eldoret, the first (and still only) child life training site in Africa, bringing vital psychosocial support skills to cancer patients, other critically ill children, and their families. We are delighted to support the continued growth of this child life training program, expanding skills across Kenya, Africa, and beyond.
We advocate for the integration of child life practice into all elements of retinoblastoma care worldwide. Through online resources, training events, and other activities, we help raise awareness, understanding, and practical skills among caregivers, clinicians, and all in the child’s circle of care.
This video showcases the work of the child life team.
Read more about Child Life in our blog:
Child Life in Kenya: The Sally Test Child Life Program
Children with cancer experience many invasive procedures and stressful events that can negatively impact their coping, development, health, and well-being throughout life. Child life supports effective healthcare and reduces trauma. Morgan Livingstone CCLS describes how WE C Hope brings hope through Child Life to children and their families in Africa.
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 medical care and life experience 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.
How to Advocate for Child Life Support in Your Child’s Medical Care
Being chief advocate is one of the parent’s most important roles throughout their child’s cancer experience. Rb Survivor and WE C Hope CEO, Abby White, explores why 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.
One Retinoblastoma World
Collaborative research, acute and lifelong clinical care, and psychosocial support to benefit the majority of children, survivors, and families can only be developed through inclusive meetings with a real-world focus.
One Retinoblastoma World gathers together eye and cancer specialists, researchers, parent and survivor advocates from around the world to pursue best possible care. Jointly planned and led by those with professional expertise and lived experience, a mix of presentations, panel sessions and intensive round-table discussions help to advance knowledge and understanding, work through priority challenges together, and support rigorous international research.
The multi-disciplinary networking and community-wide collaboration will ultimately build greater knowledge and scientific evidence to improve survival, vision outcomes, and psychosocial care for all children, survivors, and families.
WE C Hope UK is immensely proud to have founded One Rb World when we hosted the first meeting in October 2012, immediately before the International Society of Paediatric Oncology (SIOP) world congress in London. We also provided children’s activities, and the meeting’s child life program now empowers children to understand, engage with, and thrive through their Rb experiences, while advocating for their holistic care.
Since London 2012, five One Rb World meetings have been hosted by different institutions and organizations and WE C Hope chapters. WE C Hope USA is planning and hosting the 7th One Rb World meeting in Honolulu, Hawaii, 15-17 October 2024, immediately before the 56th SIOP World Congress (17-20 October). We can’t wait to welcome our global community.
Watch Reflections from One Rb World 2017 in Washington D.C. for a taste of what you can expect in Hawaii in October 2024 – bigger, brighter, bolder for the best care possible!
