World Eye Cancer Hope has chapters in the UK, USA, and Canada, and a partnership with Kenya. We also work with organizations around the world and will add information about them here.
Our Chapters At a Glance
Our chapters are quite different because of the reasons for their foundation, their areas of retinoblastoma focus, and the organizations that serve the Rb community in each country. Below is a summary of each. We hope this will help visitors and supporters understand the differences and reasons for this.
World Eye Cancer Hope Canada
Our Canadian chapter was founded initially to help fund care for one child, Rati, when she travelled from Botswana to Toronto for treatment. Fundraising events took place in Toronto, and hosted by wellwishers across the country, to support vital medical care.
Many opportunities to save Rati’s life in Africa were missed, and for every child like Rati who reaches expert care in a developed country, thousands have no chance.
When Rati died in 2006, Brenda Gallie, then Director of the Rb Program in Toronto, travelled to Kenya for one week with our co-founder, Abby White, to seek solutions for other children.
During the week-long visit, they learned about the challenges accessing Rb care from affected families; led a very interactive session on retinoblastoma at the regional referral hospital in Kisumu; and hosted a community awareness event, inviting the general public to learn about Rb and childhood cancer at a free meal.
They returned to Kenya for a month in November 2007, together with child life specialist Morgan Livingstone, who had supported Rati and her family in Canada. Morgan led a pilot program of child life supports and training at Nyanza Provincial Hospital. The valuable connections she made laid the foundations of today’s Kenya Child Life Training Program – a world-leading venture in psychosocial supports for critically ill children in Africa and beyond.
Brenda and Abby visited every major hospital across Kenya (public, mission and private) that treats retinoblastoma. Partnerships across the country grew quickly from that visit, and the Kenya National Retinoblastoma Strategy was officially launched in September 2008. Helen Dimaras also joined the Canadian team in 2008, with a global eye health perspective. Helen is one of the few scientists globally to focus almost exclusively on retinoblastoma.
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.
WE C Hope Canada is highly research driven, focusing on activities that support evidence-based care and patient engagement in research around the world.
Morgan Livingstone leads child life training for developing countries, based at the Sally Test Pediatric Centre in Eldoret, Kenya. She works with all our chapters to lead child life programming at One Rb World, deliver training to our community, and offer retinoblastoma-specific child life support at other WE C Hope events.
Canada Base, International Focus
WE C Hope Canada works alongside and in collaboration with the Canadian Rb Society, which serves affected families and survivors across Canada; and the Canadian Rb Research Advisory Board (CRRAB), which guides patient-led research.
Visit WE C Hope Canada
World Eye Cancer Hope UK
Daisy’s Eye Cancer Fund UK (now World Eye Cancer Hope UK) was founded when bilateral Rb survivor, Abby White, received an enquiry from one family in Africa. Rati’s cancer had returned 19 months after delayed eye removal surgery, with no hope of cure in her homeland, Botswana. Her family asked simply for information, advice, and prayer.
English Rb survivor, Daisy, had just returned home from treatment in Canada, when her Canadian doctor, Brenda Gallie, offered Rati help. Daisy’s parents gave initial funding to make this possible, and Daisy’s Eye Cancer Fund was established in both England and Canada to support continued fundraising for Rati’s care.
Rati’s Challenge
Abby and Dr. Gallie talked frequently about the challenges of bringing a child to another country for treatment. Logistics, costs, and fundraising make this very difficult, and multiple opportunities to save Rati’s life in Africa were missed.
When Rati died in 2006, Abby and Brenda travelled to Kenya to investigate how they could help tackle the issues that caused her to die. Abby’s father was born in Kenya, and diagnosed with bilateral Rb in Nairobi in 1946; and 25% of sub-Saharan Africa’s ophthalmologists train in Kenya. This was a good place to begin.
During the week-long visit, they learned about the challenges accessing Rb care from affected families; led a very interactive session on retinoblastoma at Kisumu’s regional referral hospital; and hosted a public awareness event, offered with a free community meal.
In November 2007, they returned for a month, together with child life specialist Morgan Livingstone, who had supported Rati and Daisy in Canada. Morgan’s pilot program of child life supports and training laid the foundations of today’s Kenya Child Life Training Program – leading the world in psychosocial supports for critically ill children in Africa and beyond.
Brenda and Abby visited every major hospital (public, mission and private) that treats retinoblastoma. Partnerships grew quickly, and the Kenya National Retinoblastoma Strategy (KNRbS) was officially launched in September 2008.
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.
We have supported hundreds of families struggling to access care in various ways. These include uninsured patients; families in conflict zones and refugee camps; families seeking help before, during or after international care; and families affected by pandemic travel restrictions.
WE C Hope cannot fund individual patients. We advise and support families, while focusing our limited resources on programs that can make a lasting positive impact for many. We advocate for quality international patient care, and support the growth of specialist Rb programs to meet comprehensive family needs.
Our global community makes greatest progress when we address key parent and survivor priorities together. WE C Hope UK hosted the first One Rb World meeting in October 2012, immediately before the International Society of Paediatric Oncology (SIOP) world congress in London.
One Rb World unites all stakeholders to collaborate for the best possible acute and lifelong care for all. The meeting has grown each year, welcoming more families, survivors, medical professionals, and scientists from around the world.
One Rb World is planned, funded, and hosted by different groups depending on the SIOP congress location. WE C Hope UK provides admin, logistical, website, and promotion support for each event planning team.
UK Base, International Focus
WE C Hope UK works alongside and in collaboration with the Childhood Eye Cancer Trust, which serves affected families and survivors across the UK. CHECT serves the UK retinoblastoma community well, and WE C Hope UK focuses on improving care and cure in less well resourced regions of the world.
World Eye Cancer Hope USA
After founding Daisy’s Eye Cancer Fund in the UK and Canada, Abby White received many requests for help from American families and survivors. No US non-profit offered tailored Rb support or advocacy, so Abby began exploring ways to fill this gap. Daisy’s Eye Cancer Fund USA was founded in 2012 to address family and survivor needs, and encourage action on the obstacles to highly effective care.
In 2015, Daisy Fund rebranded across all our chapters to become World Eye Cancer Hope, reflect our evolution from the individual child to national and global outreach.
Today, WE C Hope USA provides practical advice, advocacy and support across the country. Successes include:
- Working with families, hospitals, and agencies to ensure ongoing care during insurance and Medicaid disputes.
- Hosting family and survivor days/weekends across the nation, and virtual events, welcoming guests from 30+ states. Virtual events have included a survivor meet-up; child life activity sessions; and a back-to-school session for parents, focused on practical supports and inclusive education planning for children with sight loss.
- Sponsoring Camp Sunshine Rb Week – a wonderful retreat including diagnosed children, siblings, and their caregivers.
- Establishing a growing collaboration with Know the Glow, a fabulous US non-profit working globally to educate about leukocoria and the potentially blinding childhood eye conditions it can indicate. Together, we advocate early detection and referral for prompt medical care.
In 2017, WE C Hope USA hosted the 4th One Rb World meeting, and the first National Rb Family and Survivor Day. These wonderful events brought together our global Rb community in Washington D.C., and accelerated the organization’s growth.
In August 2023, WE C Hope USA President, Marissa Gonzalez, spoke about One Rb World at the first Africa continental meeting of the International Society of Ocular Oncology, held in Mombasa, Kenya. Her experience in Africa led WE C Hope USA to fund donation of 300 Arclight ophthalmoscopes across 6 countries in Africa and Asia. Together with Know The Glow outreach to these countries, donation of the low-cost, high-tech eye screening devices will significantly enhance early detection of eye cancer and other vision-threatening conditions.
In October 2023, the New York Times featured Marissa in the Opinion Section cover story “It Takes a Lifetime to Survive Childhood Cancer”. This article drew significant attention to retinoblastoma and its lifelong impacts, across the USA and internationally.
WE C Hope USA has grown thanks to a small group of dedicated people dispersed across the country. Primarily parents and survivors, the team has persisted through many setbacks, including sight loss and second cancers. With broad experience of life with retinoblastoma, the team is well-placed to develop programs that will benefit families and survivors, and advance patient care across America, while also taking a leading role in global Rb advocacy.
Find Out More About Our Chapters
Canada @ the University Health Network
UK registered charity
USA 501(c)(3) non-profit
Kenya Childhood Cancer Trust
Find Out More About Our Partners
