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 Fall 2023, we 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 have so far donated 300 Arclight ophthalmoscopes to 6 countries, increasing access to life and sight-saving frontline eye care for children across Africa and Asia.
Read more from our blog:
Leukocoria awareness advocate, Megan Webber, explores why glow awareness and community eye screening are vital to early detection and referral, and how Know The Glow and WE C Hope are helping to ensure children receive timely, effective care.
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.
Retinoblastoma Family Events:
WE C Hope has held two regional family days (St Louis and Philadelphia), four regional Family Weekends (Chicago, Washington D.C. Austin, and Denver), and six annual Southern California Family Days. Children in treatment, young survivors, siblings, parents, older survivors, family members and supporters – we all connect and share support while enjoying fun activities and fabulous food.
We aim to develop Family Groups across the USA, so that eventually every family and survivor will have access to face-to-face support close to home.
Read more from our blog:
On the weekend of February 16-18, 2024, fifty Rb patients, survivors, and their family members for three days of connection and fun in Colorado’s capital.
Fun in the So Cal Sun: 6th Annual Southern California Retinoblastoma Family Day
On November 4th, 2023, nearly 100 young patients, survivors, family and friends gathered to celebrate and support the amazing Rb community in Southern California
Rb in D.C. Part 1: A Capital Weekend of Friendship, Community and Fun
Over the weekend of March 10 – 12, 2023, 80 Rb patients, survivors and families shared a joyful adventure and sustaining support in Washington D.C. (part 2 is linked at the end).
Laughter, Life Lessons and Love Take Root at the Texas Rb Family Weekend
On December 2-4, 2022, the Lone Star State shone bright as World Eye Cancer Hope USA welcomed survivors, patients and families from across the state for a festive weekend of fun and friendship.
Midwest Retinoblastoma Family Weekend: Friendships Formed in the Windy City
On the weekend of July 8-10, 2022, patients, survivors and families gathered for the first-ever Midwest Retinoblastoma Family Weekend, just outside Chicago. A celebration of friendship, support, hope, and fun shared together.
Reflecting on One Retinoblastoma World 2017
In October 2017, WE C Hope USA hosted the first national Rb Family Day, in conjunction with the fourth One Retinoblastoma World meeting in Washington D.C.
National Retinoblastoma Strategy
We 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, patient-led medical care, and family support initiatives to improve care for all affected children, adult survivors and their families across America.
International Activities
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. This is where WE C Hope began, and we are proud to be an active part of the global Rb community.
Rati’s Challenge
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. Through this 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 C Hope USA has been proud to support the recent growth of this child life training program.
This video showcases the work of the child life team.
Read more about Child Life in Kenya: The Sally Test Child Life Program.
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 USA is immensely proud to have hosted or co-hosted four One Rb World meetings:
- 2017 in Washington D.C.
- 2020 (Virtual) in collaboration with WE C Hope Canada and other Canadian Rb organizations.
- 2021 (Virtual) and 2024 (Honolulu, HI) in collaboration with Dr. Sandra Staffieri at Royal Children’s Hospital Melbourne, representing our Australian Rb 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!
