View from a rollercoaster about to drop down steeply towards a river bathed in sunlight and surrounded by verdure.

The Retinoblastoma Rollercoaster

Childhood cancer care is often a long and winding road for the entire family, with many successes and setbacks, triumph, despair, and new hope. WE C Hope Director, Lori Baños, creator and moderator of the Facebook group Rb Moms, reflects on the wild rollercoaster ride when a child is diagnosed with eye cancer. With contributions from group members.

Tree of Life - thr trunk of the tree is a DNA double helix

How DNA and Genetic Knowledge Changes Lives: the impact of genetic testing for five families affected by retinoblastoma

Retinoblastoma genetics are complex.  Their implications for medical care can be confusing for families and professionals alike.  For World DNA Day, Rb survivor and WE C Hope co-founder / CEO, Abby White, considers the central importance of DNA and genetic knowledge in caring for the child and family, during treatment and throughout life.

Rati puts on surgical gloves while her mum, Salome, and child life specialist Morgan look on. Both Rati and Morgan are wearing surgical masks. A medical play doll and various medical equipment are laid out beside Rati.

WE C Hope and Child Life: Bridging Gaps, Easing Trauma, Building Hope

Child life helps families cope with retinoblastoma care, reducing trauma, and building hope. Yet access remains limited worldwide. March is Child Life Month and the birthday of our beloved Rati, whose brief life inspired World Eye Cancer Hope. From her care in Canada to Kenya, One Rb World and beyond, WE C Hope CEO, Abby White, explores how child life became central to our mission.

KnowTheGlow awareness poster. Text reads “See it once, be alert – see it twice, be active”. Know the glow logo is in the bottom left corner. On the right, a child smiles at the camera and a white glow is visible in their right eye.

Breaking Barriers to Early Diagnosis: Revisit a Year of Action

Early Diagnosis is the foundation of effective retinoblastoma and second cancer care. Yet, many families and survivors around the world face complex, delayed diagnostic journeys. WE C Hope CEO, Abby White, reflects on the 2024 #RbEarlyDiagnosis campaign, exploring key themes, family and medical perspectives, global collaborations, and the progress our One Rb World community is making toward faster access to life-saving care.

A young boy is wrapped up in a hug from an Elmo character.

A Child With Cancer Is Much More Than A “Case”: Why Words Matter in Retinoblastoma Care and Awareness

Can the language we use impact patient well-being, conduct of research and care? WE C Hope CEO and retinoblastoma survivor, Abby White, explores the effect of scientists, doctors and reporters referring to retinoblastoma patients as “cases” rather than children, and how our One Rb World community helps create a foundation of care that nurtures complete well-being.

Two young girls and a boy sit smiling in front of a Christmas tree, all wearing pyjamas. One of the girls holds a baby girl who has a white glow in her left eye.

Angels and Zebras: How Life-Saving Holiday Pics Reveal Children’s Rare Eye Cancer

Happy Holidays from World Eye Cancer Hope! 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.

A table is covered with a large sheet of white paper featuring hand-drawn, decorative letters spelling out the words: One Retinoblastoma World 2024. The words are outlined in various colours and patterns, and the letters are intricately designed with stripes, flowers, polka dots, and googly eyes. On the table, a container holds colorful markers; sheets of stickers featuring tropical and fun designs, such as flowers, palm trees, animals, and beach items; large, playful googly eyes; hand-drawn outlines of children’s hands.

One Rb World 2024 Says “Mahalo” to the Retinoblastoma Community – Day Three | Page 4

The final moments of the 7th One Rb World Conference in Honolulu, Hawaii, were dedicated to patients, families, and survivors, showcasing how empowering them can transform their individual experience and collective progress. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, tells of the inspiring child life programming, and groundbreaking patient engaged-research building bridges of hope and healing for our retinoblastoma community worldwide.

Pamela Paul stands at a light wooden podium against a black background. She wears a blue dress patterned with yellow, pink, and orange flowers.

Storytelling for Life: Global Solutions and Lifelong Care at One Rb World 2024 Day Three | Page 3

As the 7th One Rb World Conference in Honolulu, Hawaii, reached its final hours, personal insights and global initiatives took center stage. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, reflects on the collective mission to save lives, including The New York Times Opinion feature, “It Takes a Lifetime to Survive Childhood Cancer,” – and the story behind the article.

Mark sits at a round table covered in a white tablecloth, He wears a black t-shirt and black glasses, and holds baby Lennox on his lap. Lennox wears a white t-shirt with green sleeves. A woman seated close by is smiling as she watches them together.

From Treatment to Triumph: Seeking Cure for All at One Rb World 2024 Day Three | Page 2

Day Three of the 7th One Rb World Conference in Honolulu, Hawaii, continued to inspire with an in-depth exploration of treatment pathways, survivor resilience, and global efforts to save lives. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, shares highlights from the vital discussions and profound personal stories shaping a hopeful future for all affected by retinoblastoma.

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.