Three young girls sit one behind the other as they enjoy riding together down a slide. The girl at the back has curly brown hair and wears a light pink sweater. The middle girl has blonde hair and wears a light purple shirt. The girl in front has light brown hair, wears a pink top, and holds a plaid cushion. They are surrounded by green foliage and trees in the background. The sun creates halos around their hair as it blows with their movement down the slide, and blue sky is seen in the top right corner, beyond the trees..

Bridging the Gaps: How Community and Shared Responsibility Create the Best Retinoblastoma Care

Being the parent of a child with retinoblastoma, or living with the effects of this cancer every day, 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.

Three sets of eyes represent different ethnic groups, each labelled with their respective ethnicity. The “White” eyes show bright red reflex, the “Asian” eyes display a yellowish reflex, and the 'Black' eyes have a creamy-white reflex. These colours are visible in the pupils of the eyes.

The Arclight and Fundal Reflex Test: Shining the Light on Retinoblastoma

Screening children’s eyes with the Fundal “Red” Reflex is key to early detection of retinoblastoma, but until recently, it was difficult to deliver in many countries. Dr Andrew Blaikie, ophthalmologist and clinical lead for the Arclight Project at the University of St Andrews, describes the importance of this simple exam, and how the Arclight improves eye health access and outcomes for children with eye cancer around the world.

Side-by-side photos of two young girls with a text overlay. On the left, a smiling Caucasian girl with wispy light brown hair, wearing a floral dress, holds a bouquet of daisies. She is outdoors, bathed in sunlight. On the right, a smiling African girl with short black hair relaxes on a colourful plaid sofa. She is wearing a pink top with a ruffled neckline, and rests her cheek on her hand. Across the top, in cursive script, text reads "Daisy Gave Rati Hope".

From One Child to One Rb World: Our Foundation Story

Daisy’s Eye Cancer Fund (now World Eye Cancer Hope) evolved from the generosity of one family sharing hope with another at opposite ends of the earth, creating light within the darkness that retinoblastoma brought to their lives. Rb Survivor and Daisy Fund co-founder, Abby White, shares Rati’s story, and how her experience led to our hope-building work today.

A large group of people gather together for a group photo. Some are wearing beaded t-shirts showing the Daisy Fund logo.

From One Child to One Rb World: WE C Hope for Retinoblastoma Care

In the first half of this article, we met Rati and Daisy, two young children with retinoblastoma who inspired the foundation of Daisy’s Eye Cancer Fund in 2004. In part 2, Rb Survivor and Daisy Fund co-founder, Abby White, reflects on what happened after Rati died – our journey to World Eye Cancer Hope (WE C Hope), One Rb World, and advocacy for all children, survivors and families.

Two women are seated at a round table in a conference room, directly facing each other as they engage in deep discussion. The woman on the left clasps her hands on her lap and looks highly focused. The woman on the right gesticulates with both hands raised to chest level, palms facing towards the other woman, with her fingers splayed. She appears to be explaining or emphasizing a point, or trying to convey information clearly. A tablet and notepad rest on the table between the two ladies.

Capture the Moment at One Retinoblastoma World 2024 in Hawaii

One Retinoblastoma World is community, conversation and collaboration for the best lifelong Rb care and support.  Previous participants share why the event is so valuable.  Rb survivor and WE C Hope CEO, Abby White, considers the many benefits of participating in person compared to attending online, and some ways we can travel “kuleana” to the conference.

Close-up photo of a young toddler with a blue and white pacifier in their mouth, looking directly at the camera. The right side of the child’s face is bathed in light while the left side is in shadow. The pupil of the right eye has a prominent pearly glow. The blurred background emphasizes the child's face. Overlaying the background, bold white text states "An early diagnosis is the best cure." The word “Cure” is emphasised in a flowing gold script.

Early Diagnosis is the Bedrock of Retinoblastoma Care

Despite advances in retinoblastoma treatment, effective care is challenged globally by delayed diagnosis. Early diagnosis saves lives and improves sight-saving options. Rb survivor and WE C Hope CEO, Abby White, explores common reasons for delayed diagnosis, four pillars needed to achieve routine early diagnosis, and how our One Rb World community is united in this goal.

Close-up of a toddler with blue eyes, one of which has a creamy glow in the pupil. The child’s mouth is slightly open, with a curious or surprised expression. The child wears a pastel lilac jacket. The background is blurred and indistinct, putting the focus on the child's face. Overlaying the background, bold white text states "PREVENT CHILDHOOD BLINDNESS." Below is a thin yellow horizontal line.

Illuminating a Child’s Health: The Power of Glow Awareness and Innovation in Detecting Retinoblastoma

Worldwide, many children with eye cancer are diagnosed late. Early diagnosis saves lives, and offers the best opportunity for safe vision saving therapy. 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.

Four ladies in party dress stand in front of a royal blue backdrop with a sign in bright turquoise blue and magenta that says Hope Without Boundaries.

Beyond Borders: Retinoblastoma in Africa and the Pacific

We recap a highly successful first conference in Africa for the International Society of Ocular Oncology, and look forward to One Retinoblastoma World 2024 in Honolulu, Hawaii. With One Rb World meeting co-chairs Dr. Jesse L. Berry, Children’s Hospital Los Angeles, USA; Sandra E. Staffieri PhD, Royal Children’s Hospital Melbourne, Australia; and Marissa D. Gonzalez, World Eye Cancer Hope USA.

An illustration of a syringe holding medicine. The syringe casts a long shadow in the shape of a dollar symbol.

Investing in Hope: The Quest to Fund Retinoblastoma Research

Research funding is vital to improve retinoblastoma early diagnosis, life and sight-saving treatment, family support, survivor care, and cancer prevention. But securing the funds for rare cancer research is very tough, often demoralising for researchers and clinician-scientists. Three retinoblastoma researchers share their experience, and two organizations helping to drive Rb research forward invite you to help.

A group of people representing diverse ethnic backgrounds are sitting or standing around a table scattered with post-it notes. They are deep in conversation, and several are reaching out to move post-it notes into new positions on the table.

United Against Retinoblastoma: The Importance of Global Data and Collaboration

Understanding how retinoblastoma affects children is critical to improve diagnosis, treatment, support and outcomes for all.  Mattan Arazi, M.D and Ido Didi Fabian, M.D., MPH, world-focused ophthalmologists from Sheba Medical Centre, Israel, explore why global data and collaboration are so important in Rb research, and the knowledge, progress, and hope they are building for families and professional teams worldwide.