The First Alphabet of Hope
In 2012, for the first One Retinoblastoma World meeting in London, we produced a beautiful Alphabet of Hope, with insights and reflections from families affected by retinoblastoma around the world. Every 2 weeks throughout 2018, we shared via social media a word and accompanying thought from the Alphabet, to help raise awareness of different experiences through the retinoblastoma journey.
Perspectives shared through the Alphabet of Hope spoke to people who had no previous experience of childhood eye cancer, to family members, medical professionals and individuals with different personal experiences. It sparked conversation and gave a voice to subjects infrequently discussed.
As our sharing of the Alphabet of Hope drew to a close, we began to think about how different aspects of the retinoblastoma experience could benefit from this simple form of expression, and the possibility of beginning a new Alphabet in 2019. And so the Alphabet of Hope began to evolve.
Explore the Previous Alphabets of Hope
- 2018 (2012) – #AlphabetOfHope
- 2019 – #LifeBeyondRb
- 2020 – #FamilyInSight
- 2021 – #MindAndBody
- 2022 – #RbCare
- 2023 – #RbResearch
The 2024 Alphabet: #RbEarlyDiagnosis
Babies and young children with eye cancer can’t tell us their sight is changing. They need caregivers to know of and act on early retinoblastoma signs, prompt eye exams to find possible cancer, and referral with good family support to aid swift diagnosis and care. This creates the best potential to save children’s sight and life worldwide.
The #RbEarlyDiagnosis Alphabet Of Hope highlights many aspects of early detection, including signs and symptoms, challenges, and efforts globally to overcome them.
Please follow this year’s #AlphabetOfHope!
- Look out for the regular Alphabet posts shared on our Facebook Page and Instagram. We’d love to read your feedback and hear your experiences of #RbEarlyDiagnosis as we share each letter – whether you are a parent, survivor, medical professional or researcher. Please join in the conversation on our social media throughout the year.
- Search for our posts using the hashtags #AlphabetOfHope and #RbEarlyDiagnosis.
- Visit this page for all published letters and signposts to further resources on our website. You can navigate to the page quickly at wechope.org/alphabetofhope
The Current Letter
All six eyes in this photo show normal fundal reflex.
The Alphabet and Resources
A
Arclight: Thorough eye exam is vital to detect and treat vision threats early, including eye cancer. We support the Arclight, a low-cost, high-tech, easy-to-maintain ophthalmoscope advancing children’s access to eye care worldwide.
Further Resources:
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.
B
Bedrock: Early diagnosis is the foundation to effective cancer care. For young children with eye cancer and survivors with second cancer risk, education, prompt exams and swift referral are critical to early detection.
Further Resources:
C
Cameras are brilliant! They capture precious fleeting life moments, and even save life! With Red Eye Reduction/correction turned OFF, they can detect cancer and other serious child eye disorders long before humans see the signs.
Further Resources:
Know the Glow – White Pupil (leukocoria)
The common early sign of retinoblastoma, a white pupil glow in the affected eye, is seen in dim light and photographs when a flash is used without red-eye reduction. This section includes answers to FAQs about the glow, a photo quiz, tips on taking photos to check children’s eyes, and advice for next steps if you observe a white glow.
Do you want to turn your smartphone into a powerful cancer-detector? Mark Billings, WE C Hope USA Director, tells the story behind the CRADLE app and explains how you can help scientists improve it.
D
Diagnosis: Early detection of eye cancer is vital to save a child’s life and sight with the least invasive therapies. Especially in resource limited countries. Investing in Rb education and eye exam infrastructure is key to cure.
Further Resources:
How Do We Achieve Early Diagnosis of Rb?
Achieving early diagnosis is not simple nor easy. WE C Hope CEO, Abby White, explores various routes to awareness and diagnosis, and how they can impact patient care.
Light Up for Rare and Share Your Retinoblastoma Colours on February 29!
Retinoblastoma is a rare cancer, affecting around 1 in 16,000 live births. Rarity poses challenges to diagnosis, care, and research. Rare Disease Day matters to our community! Discover how you can glow bright on the evening of February 29 to help form a Global Chain of Light for everyone living with rare childhood eye cancer and its effects.
E
E Komo Mai (welcome): WE C Hope in community, conversation and collaboration! Sharing knowledge and lived experience, developing and testing new solutions together, we improve Rb diagnosis, lifelong care, and support.
Further Resources:
From One Child to One Rb World
World Eye Cancer Hope (originally called Daisy’s Eye Cancer Fund) evolved from the generosity of one family sharing hope with another at opposite ends of the earth. In this two-part article, Rb Survivor and Daisy Fund co-founder, Abby White, shares Rati’s story, and how her experience led to our hope-building work today.
Meet Rati, and discover how the generosity of Daisy’s family created light within the darkness that retinoblastoma brought to both families.
Pt 2: WE C Hope for Retinoblastoma Care
What happened after Rati died? Follow our journey from one child to World Eye Cancer Hope and One Rb World, and advocacy for all children, survivors & families.
F
Fundal Reflex (Red Reflex) looks different in light / dark eyes. Parents and health workers need to know what healthy and abnormal fundal reflex looks like. Prompt referral to specialist eye care can save a child’s life and sight.
Further Resources: