WE C Hope of effective care for all children with retinoblastoma, survivors and their families.
A very young organization, we are focusing on building up our foundations so we will be strong to achieve our many dreams. Our long term goals are to improve family support across the USA, nurture a national approach to retinoblastoma care, and invest in the international work of our WE C Hope colleagues in Canada and the UK.
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.
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.
Retinoblastoma Family Groups: we aim to develop single-state and regional family groups across the USA, so that eventually every family will have access to face-to-face support close to home. Each family group will provide a program of social activities, information for families, a small grants fund for families in need, and local advocacy.
National Retinoblastoma Strategy
Wwe aim to build on the success of our colleagues in Canada, the UK and Kenya, who have developed nationally focused care. We hope to nurture a national collaborative multi-center approach to retinoblastoma care, encompassing awareness campaigns, evidence-based medical care and family support initiatives to improve care for all affected children, adult survivors and their families in America.
As well as our national activities focused on families and survivors in America, we recognize the need to share hope with children and families around the world. We aim to invest in these activities as our organization grows.
In September 2006, our Canadian and UK colleagues created “Rati’s Challenge” to address the needs of families affected by retinoblastoma in Africa. The Kenya National Retinoblastoma Strategy was launched through this program in September 2008.
The National Strategy includes awareness education and early detection initiatives, medical training, telemedicine, personalized care, and family support.
WE C Hope partners with the Kenya Childhood Cancer Trust, sharing fundraising and administrative responsibilities for Rati’s Challenge activities.
Collaborative research, clinical care and family support to benefit the majority of children 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. At a biennial working meeting hosted by WE C Hope, Intensive round-table discussion helps identify practical solutions to grow infrastructure, facilities, resources, knowledge and skills for effective care of all children with retinoblastoma.
Collaborative effort and networking among the multidisciplinary delegation establishes solid foundations to support rigorous international multi-center research. This collaboration will ultimately build greater knowledge and scientific evidence to improve survival, vision outcomes and psychosocial care for all children, families and survivors.