10 adults smile together in front of a sign reading “Mahalo! One Retinoblastoma World”. Peggy and Michael are wearing black long-sleeve tops with dark wash jeans. Kirsten Ramos wears a blue shirt with light wash jeans. Jesse Berry wears a green dress with ruffles around the collar. Cat Paul and Joe Cox are wearing aqua-blue One Retinoblastoma World 2024 t-shirts featuring the conference logo and a design with palm trees, hibiscus, and waves. Victoria Danhakl wears a yellow and brown floral dress. And Roselle and Josh Castanon wear shirts with the slogan: I wear gold to support my daughter.

A Global Call to Action: Early Detection and Advocacy at One Rb World 2024 Day Three | Page 1

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.

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Grace stands in front of a Hawaiian-themed backdrop of lush green foliage, flowers, fairy lights, and the word Aloha written in a glittery gold cursive font. She wears a beautiful floral dress in shades of pale pink, orange, and white. Her conference lanyard clearly shows her name badge, reading Grace Mbugua. She smiles broadly and holds a sign in each hand – one says: World Eye Cancer Hope - life and sight for every child. The other says: One Retinoblastoma World, Honolulu, Hawaii, October 15-17, 2024.

One Rb World 2024 Shines the Light on Life-Saving Care: Highlights from Hawaii Day Two | Page 2

Continuing our review of Day Two at the 7th One Rb World Conference in Honolulu, Hawaii, we explore critical life-saving advancements in global retinoblastoma care. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, delves deeper into the research developments, technological breakthroughs, collaborations, joyful child life, and uplifting survivor stories shaping a brighter future for all.

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Two young girls stand side-by-side in front of a colorful Hawaiian backdrop of gold grass skirt and verdant green leaves adorned with pineapples and vibrant hibiscus flowers. Both girls wear leis, smile broadly, and hold signs displaying bright logos. On the left, Nicole is wearing a black baseball cap backwards, a yellow t-shirt, and white joggers, and holds a white sign that reads: One Retinoblastoma World, Honolulu, Hawaii, October 15-17, 2024. On the right, Natalie sports her pink glasses, pink t-shirt, and light blue jeans, and holds a white sign that says: World Eye Cancer Hope, life and sight for every child.

One Rb World 2024 Shines the Light on Life-Saving Care: Highlights from Hawaii Day Two | Page 1

The 7th One Retinoblastoma World conference took place in Honolulu, Hawaii over three days in October 2024. Day Two brought perspectives from around the globe as our scientific programming took center stage. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, shares highlights from discussions on life-saving care and technological advances in the second installment of this three-part conference review.

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A blue question mark hangs in the forefront of the image. In the background, a man in a lab coat holds the end of his stethoscope towards the camera to form the dot of the blue question mark.

Wiki Wiki!: Accelerating Referral for Retinoblastoma and Second Cancers

The Hawaiian word “wiki wiki” means “fast”.  The global wiki culture embodies the urgent collaborative action needed for children with possible retinoblastoma, and survivors with second cancer risk.  Timely diagnosis is the best cure, but referral delays are common worldwide.  WE C Hope CEO Abby White explores common causes, how to avoid them, and speed up referral for optimal care.

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On the left of a large conference room, a speaker stands at a wooden podium, addressing the audience. David is a white man wearing a blue suit. Beside him, fellow panelists sit at a long table draped with a cloth bearing the One Rb World logo. A large screen displays key discussion points on Retinoblastoma Survivorship Care – bullet points are out of focus. The audience is seated at round tables with white tablecloths, attentively listening and watching both the panelists and screen. The room is decorated in dark wood paneling and large murals depicting natural landscapes.

Hawaii Says “ALOHA” to the 7th One Rb World Conference and Global Retinoblastoma Community

The shores of Waikiki Beach welcomed 175 guests to the 7th One Rb World conference this month, and more online, as Honolulu played host to this incredible meeting of retinoblastoma patients, survivors, families and medical professionals. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, reflects on the social gathering and Day One of the program in the first installment of this three-part conference review.

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The Life-Saving Power of a Squint: When to Investigate a Child’s Turned Eye

Evalynn, Gabriel, Abby and John all developed strabismus (squint or turned eye), one of the most common signs of retinoblastoma. This can also occur in healthy eyes or affect multiple family members without eye cancer. Sandra Staffieri, Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, explains, and answers the key question – when should parents and doctors be concerned?

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View along a vast valley under a dramatic sky. On the left, rocks are strewn in the foreground, and steep rugged hills lie in shadow. Sunlight breaks through dark clouds above, illuminating the verdant valley floor and rolling green hills beyond. A lush oak tree stands prominently in the foreground, its canopy festooned with childhood cancer gold ribbons. A meandering path leads up to the tree and continues into the distance, following the contours of the hills into the misty brightening distance.

Screening for Familial Retinoblastoma and Related Second Primary Cancers

Familial retinoblastoma affects more than one person in a family, and individuals with a heritable RB1 gene mutation have increased cancer risk throughout life. Finding cancer early is vital for the best treatment and outcomes. Revisiting blogs from ocular oncologist Alison Skalet M.D. PhD, and WE C Hope CEO / Rb Survivor, Abby White, we explore screening for high-risk individuals at all stages of life.

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A black and silver compass tipped on its side facing the camera. The compass is sitting on top of an open paper map that extends out behind it out of focus.

Referral for Possible Retinoblastoma or Second Primary Cancer

Many parents and survivors report signs and symptoms of retinoblastoma and related second cancers to primary care providers. Prompt referral is vital for timely diagnosis and optimal treatment. WE C Hope CEO Abby White explores who needs referral and when, and the key elements of an effective referral process – for children with possible eye cancer, and survivors throughout life.

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A quote is centred near the top over a vivid ocean sunset scene. Text reads: Some journeys don't have endings, they lead to new beginnings. These are the journeys that lead to great adventures! Near the bottom of the image, smaller italicized text reads: Alex Haditaghi | from Softly, As I Leave Her, 2016. In the ocean scene, the white sun is low on the horizon, casting a golden path of sparkling light across deep blue water. The sky is rich with colour – bright goldenrod near the sun, fading into soft honey pastels and a deepening blue above. A bunting of wispy clouds reflects the warm glow.

One Retinoblastoma World: A New Realm of Discovery

When Retinoblastoma Care Co-ordinator Sandra Staffieri left Australia in August 2012 for a conference in Italy and a tour of Rb centres in North America, she had no idea how radically the journey would change her life and care at the Royal Children’s Hospital, Melbourne. Yet as she departed, One Rb World, the key destination on her trip, was not even on her itinerary. 12 years later, the impact of that trip continues…

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A young boy sits on his mother’s lap and next to his father while having an eye exam. Both parents help to keep him calm and still. An orthoptist sits about arm’s length away, holding an ophthalmoscope up to her own eye to observe the child's eyes. In her other hand, she holds a brightly coloured rattler toy, encouraging the child to look at her. The ophthalmoscope’s powerful light illuminates the child’s eyes in the dimly lit room. A Snellen chart also glows on the wall behind the family.

Early Detection Saves Lives: Primary Care, Retinoblastoma, and Second Cancers

Primary care providers are pivotal in the timely diagnosis of retinoblastoma and related second cancers.  They are usually the first contact for parents and survivors concerned about signs and symptoms.  WE C Hope CEO Abby White explores their key role, the challenges they face in recognizing signs and securing a swift referral, and the need for education targeting primary care providers.

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