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.
We hope you enjoy this video showcasing the complete Alphabet and all the images shared throughout the year. A full text version can be found directly below the video, including links to further resources relating to the subject.
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.
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G
Gold Ribbon: Shining with childhood joy and optimism, this ribbon celebrates the victory of each life saved, honours the memory of every precious child lost, and shines with hope of cure for all children with cancer worldwide.
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H
Ho’omau (persevere): Diagnosing Rb early is a global challenge. From wealthy countries with world-class healthcare to populous nations with limited resources, and remote island communities. Together, we persevere for all children.
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“Have We Spoken Before?” Same Retinoblastoma Diagnosis Story, Different Parents…
Many families tell of delayed pathways to care when their child is diagnosed with eye cancer. Orthoptist and retinoblastoma care coordinator, Sandra Staffieri, and leukocoria awareness advocate, Megan Webber, are frustrated by the repeated stories and their negative patient impacts. They explore why these delays continue, some efforts to overcome the challenges, and where they find hope for the future.
I
’Ike (to know): We desire to learn, to know… Why does my child’s eye glow in dim light? Why don’t the eyes move together? Why are they different colours? How can we best support prompt exam of signs and symptoms for early diagnosis?
Further Resources:
A Glint or a Squint Could Be Your Hint: Knowledge is Key to Retinoblastoma Early Diagnosis
Critical clues to a child’s eye cancer hide in plain sight. Parent and physician knowledge, and ability to spot these silent signs are vital to early detection, swift referral, and prompt diagnosis. Meet five children from around the world whose parents’ curiosity, nagging concern, and action were pivotal to their diagnosis and life-saving, sight-saving care.
J
Jeopardy: Childhood eye cancer is curable when contained in the eye; early diagnosis is vital to save sight. Delayed diagnosis threatens the child’s life and leads to more complex, costly treatment, with major impacts on the family.
Further Resources:
Between Shadow and Light: Young Lives in Jeopardy from Retinoblastoma
Worldwide, children and their families grapple with life-threatening eye cancer due to delayed diagnosis and care. Unchecked, retinoblastoma has far-reaching consequences. Through two family stories, WE C Hope CEO Abby White explores the impacts of low awareness, slow referral, and delayed care, and the life-saving, sight-saving opportunities they reveal.
K
Kaiāulu (community) and Kuleana (responsibility): Rb is rare. We need our global community to achieve best care. Connected, we share the responsibility to encourage, engage with, support, and invest in efforts for our loved ones, ourselves, and for all on this journey.
Further Resources:
Bridging the Gaps: How Community and Shared Responsibility Create the Best Retinoblastoma Care
Being the parent of a child with retinoblastoma, living with the effects of this cancer, or caring for patients can be a frustrating experience. With an emphasis on our year-long theme of early diagnosis, we look at some of the challenges facing our retinoblastoma world, and for each, three ways we can work together to advance care for everyone.
L
Laulima (many hands): Best Rb care demands global collaboration, cooperation, and teamwork. Testing ideas, gathering evidence, advancing patient care. For all children, survivors and families, WE C Hope uniting our One Rb World!
Further Resources:
Laulima: Many Hands, One Retinoblastoma World
Laulima signifies the power of cooperation, teamwork and collective effort. This Hawaiian concept of many hands striving together drives the One Rb World conference, taking place in Honolulu this October. Members of our 2024 conference team explain how laulima inspires their work for this global community, united to advance retinoblastoma care for all.
M
Momi (pearl): The human eye is an ocean of stories. Sometimes, a child’s eye holds a pearl, a secret glow revealed only in dim light, with an urgent, precious message: my life and sight may be in danger – pay attention, seek an eye exam now!
Further Resources:
Pearls of Light: The Pathway to Early Detection
Early diagnosis of retinoblastoma saves children’s lives, and offers the best opportunity for safe vision saving therapy. But worldwide, many children are diagnosed late. 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.
N
Na’au (gut instinct) and Noi (request): Parents and caregivers know their children best. Be inquisitive if concerned about your child’s eyes! Interrogate your unease, ask for an eye exam or referral – it may save life and sight.
Further Resources:
Gut Feelings Matter: How Parent Instinct and Intuition Detect Childhood Eye Cancer Early
Strong parent instinct and intuition often lead to a child’s eye cancer diagnosis. Rb Survivor and WE C Hope CEO, Abby White explores what they are and how they differ, why they are so important for retinoblastoma early detection, why primary care providers should take them seriously, and how they impacted the diagnosis journey of four children.
O
Ohana (family): Though small and far-flung, our global retinoblastoma family stands strong together. In trial, grief, hope, and triumph, we share and learn from our collective experience, support one another, and strive to care for all.
Further Resources:
Ohana: The Beating Heart of One Retinoblastoma World 2024
In Hawaiian culture, “Ohana” represents a deep sense of family that extends beyond blood ties to include friends, community, and all who are important in one’s life. This concept emphasizes mutual respect, cooperation, and the belief that families are bound together; that members must think of and support one another to ensure mutual wellbeing. Members of WE C Hope USA’s Board of Directors and past One Rb World participants explain how this conference unites us and strengthens ohana.
P
Primary Care Providers are key to cure when a child has retinoblastoma. The signs parents observe at home may not be easily seen on a quick exam, and masquerade as harmless conditions. Awareness is vital, and prompt eye care referral is best.
Further Resources:
Early Detection Saves Lives: Primary Care, Retinoblastoma, and Second Cancers
Q
Quality Research improves Rb early diagnosis! Data shows the best methods for public and healthcare worker education, eye exam, and referral support. With this knowledge, we can save more children’s lives worldwide, and raise potential to safely save sight.
Further Resources:
R
Referral is the vital first step to specialist care when a child has suspected eye cancer, or second cancer strikes a survivor. Sign/symptom awareness alone is not enough. Planning a supportive diagnosis pathway saves lives.
Further Resources:
S
Surveillance: Familial retinoblastoma affects more than one person in a family. Genetic testing and regular eye exams from birth diagnose children early. Survivors need effective screening to clarify their risk and diagnose second primary cancers early.
Further Resources:
T
Turned Eye: Misaligned eyes = squint, NOT lazy eye, and may be a sign of child eye cancer. All babies with squint, regardless of age, should have a prompt, thorough eye exam to rule out retinoblastoma. Waiting 6 months can be fatal.
Further Resources:
U
Ua wehe mākou: We are open to all at One Rb World. Sharing knowledge, lived experience, probing questions, tough conversation. Listening, learning, understanding, innovating; we change the future of lifelong patient care together.
Further Resources:
One Retinoblastoma World 2024 Is Here!
WE C Hope is delighted to host the 7th One Retinoblastoma World conference October 15 – 17, 2024, welcoming more than 170 medical professionals, Rb survivors, young patients, family members, and scientists from six continents to Honolulu, Hawaii, and any more joining us online for three days of programming, community and collaboration for optimal car.
Conquer Stress and Cultivate Calm with These Mindfulness Techniques
V
Venture with us to advance retinoblastoma early diagnosis, life and sight-saving medical care, compassionate family support, and lifelong care, for all affected by Rb. With your help, through our united One Rb World, WE C Hope!
Further Resources:
W
Wikiwiki (quick): When retinoblastoma or second cancer is suspected, prompt referral, diagnosis, and treatment are vital for the patient’s best outcome. Delays are common – understanding and reducing them saves lives and sight.
Further Resources:
X
eXplore the challenges to early detection and care for all affected by Rb, and the best ways to make progress together. From global action for children and families to precision medicine for patient care. One Rb World is a change-maker.
Further Resources:
Y
Yonder lies a world in urgent need of action for children with eye cancer, survivors and their families. Join us! Together, we advance early diagnosis, medical care, child life, and care for all, for life. A bright future awaits! With your help! WE C Hope for all.
Further Resources:
A Global Call to Action: Early Detection and Advocacy at One Rb World 2024 Day Three
Day Three of the 7th One Rb World Conference in Honolulu, Hawaii, was a powerful culmination of global community, collaboration, and hope. From early detection in rural communities to life-saving care, from child life to patient-led research, and more. Marissa D. Gonzalez, Conference Event Chair, shares highlights from the inspiring presentations, life-changing progress, and extraordinary stories that closed this remarkable event.
This Day Three Recap is the final instalment of our 3-part conference review. Parts 1 and 2 are linked from all four pages of Part 3. Our Day Three review includes:
- Page 1: Early detection and advocacy for prompt care.
- Page 2: Cure for all children, and preventing cancer spread outside the eye.
- Page 3: Keynote from NYT journalist, Pamela Paul; and global solutions.
- Page 4: Child life, patient engagement, and a massive Mahalo!
Z
Zebras: hear their hooves when a child’s eyes glow white, do not align, are different colours, a parent’s instinct leads, or a survivor explains their cancer risk. Rb is black and white: delayed care kills and destroys; early diagnosis saves life and may save sight.
Further Resources:
Angels and Zebras: How Life-Saving Holiday Pics Reveal Children’s Rare Eye Cancer
We love a white Christmas and the season’s festive glow – angels, fairy lights, iced cakes, candles, and snow… But we do not like a white glow in children’s eyes. Rb Survivor and WE C Hope CEO Abby White explains how festive Holiday photos could save a child’s life, and even their sight.
