A baby has a white pupil glow in the left eye, and healthy red reflex in the right eye.

If In Doubt, Check It Out: Common and Not-So-Common Signs and Symptoms of Retinoblastoma

Prompt investigation of signs and symptoms is vital to diagnose retinoblastoma early. Timely diagnosis provides the best opportunity to save a child’s life and sight.  For Retinoblastoma Awareness Week 2022, Rb Care Coordinator Sandra Staffieri explores the signs and symptoms that may lead to a diagnosis of childhood eye cancer.

Leslie sitting in a rocking chair at the hospital, holding 7 month old Thomas, Mason and Luke. Thomas is dressed in a blue and white striped outfit, wearing a blue eye patch on his right eye, Mason is dressed in green hospital scrubs with an IV that is out-of-frame. Luke is also dressed in a blue and white outfit. All the boys are alert with wide open eyes and partial smiles. Leslie's lap is quite full.

Triplets with Cancer: Surviving and Thriving Through the Unexpected

A retinoblastoma diagnosis is shocking for parents, and the journey through complex specialist care can be highly stressful. RB1 genetics mean this cancer often affects more than one child in a family. Leslie Low shares her experience of caring for her triplets – all diagnosed with cancer in both eyes, and the things that helped her family cope; physically, psychologically, and practically.

A slide from Sarah’s presentation, titled “Thank You”, with a single photo and the One Rb World 2021 Logo below. In the photo, Sarah sits on a rock structure at the top of a mountain. Her body is facing to the left, her legs outstretched, and her feet resting on a different rock. She is leaning against the rock she is seated on, looking away from the camera at the view. Slivers of blue sky peak through the blanket of clouds, and in the distance, many trees, farms, fields and national parkland can be seen from this high vantage point.

One Rb World 2021: Planning, Creating, Sharing and Raising Hope Together

On 1-3 October, we hosted a hope-filled One Rb World 2021 meeting. Planning and hosting is always an adventure, and the 6th One Rb World was especially so! Co-Chairs, Dr. Sandra Staffieri PhD, Rb Care Co-Ordinator, Royal Children’s Hospital, Melbourne, Australia, and Marissa Gonzalez, Bilateral Rb Survivor and President, World Eye Cancer Hope USA, share behind-the-scenes insight and conference highlights.

Close-up of a brown eye.

10 Ways to Love Your Eyes

Thursday October 14 is World Sight Day, and this year’s global campaign is “Love Your Eyes”. The International Association for the Prevention of Blindness encourages us to prevent eye disease with a healthy lifestyle, protect our eyes with small daily actions, preserve vision with regular eye exams, and prioritize eye health. Bilateral Rb Survivor. Abby White, shares 10 ways you can love your eyes every day.

Promotional card in tropical colours. Text reads: "One Retinoblastoma World. Virtual Conference, October 1-3. A global conference for eye and cancer specialists, researchers, parents, and survivors. Register Today!” www.wechope.org/onerbworld

Register Now for One Retinoblastoma World 2021 – Sharing Ideas, Opportunities and Friendship

As the 6th One Retinoblastoma World Conference fast approaches, this year’s organizers Sandra Staffieri and Marissa Gonzalez, together with Megan Webber, are excited to share an update. They give an overview of the program, highlighting some of the sessions and goals, and the need for global discussion and collaboration involving all stakeholders.

A family stand together on an open landscape, facing away from the camera. The mother holds a young child in one arm while her other arm is wrapped around her husband’s waist. The father holds the other child aloft on his shoulders, their hands clasped and outstretched. The sky and landscape ahead is indiscernible due to the intensity of light. The brightest beam is seen through the window formed by the father and child and their clasped hands.

Deciding to Conceive with Heritable Retinoblastoma

When children may inherit retinoblastoma, deciding how to start a family awakens new feelings in survivors. Every possible option comes with complex questions and emotional costs, and survivors and their partners may experience feelings of isolation as they navigate their decisions. Rb survivor Ruth Greenslade shares her reasons for deciding to have children, and her personal perspective of factors to consider when conceiving with heritable Rb.

A pretty cream cat with a black tail and a few black markings, including a teardrop marking over her nose, is sitting on a stepping post of her climbing unit, leaning down towards Bagpuss, an old pink and cream striped cloth cat, who appears to be looking up towards her.

Alt Text and Image Description: What It Is, How to Write It, and Why It Matters to Our Retinoblastoma Community

How would you access the information in an image if you can’t see it? How would you enjoy it and feel part of the community talking about it? Making images accessible to blind and partially sighted people is vital. Bilateral Rb Survivor. Abby White, explains what alt-text is, how to provide inclusive image description, and why this matters in our retinoblastoma community.

A pink banner with the words “register now” spans the top of the image. Diamond Head in Honolulu is bathed in light, under a slightly cloudy blue sky. The One Rb World logo includes a yellow flower for Hawaii. Text reads: One Retinoblastoma World | Virtual Conference | October 1-3, 2021

Register Now for One Retinoblastoma World 2021 Virtual Conference!

Join World Eye Cancer Hope and local organizers from Australia for the sixth One Retinoblastoma World Conference, taking place virtually from October 1 – 3, 2021. Marissa Gonzalez, WE C Hope USA President, and this year’s Hosting Chair, introduces the conference and what’s in store for this unique collaborative program uniting professionals, families and survivors.

Bright lights reflect on the floor of a long, empty hospital corridor, with many open doors. The floor is painted pale green, the walls cream, and the doors a pale purple-blue periwinkle. At the end of the corridor, large double doors are painted dark green.

Living with the Retinoblastoma Cancer Syndrome Part 2: Risks, Impacts, Challenges and Opportunities

For individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story. Sharing personal experience and insight from fellow Rb survivors, Abby White explores key challenges encountered along the way, from working with doctors who do not understand the risk to psychological impacts, and the need for more effective care.

Five creamy white tea light candles in cut crystal candle holders cast a warm glow in the darkness. The central candle holder is shaped like a lotus flower. Tiny points of colour at the base of each petal create a subtle rainbow effect throughout the glass that is very faintly reflected in the glass of the other candle holders, and in the light cast on the wood surface where they rest.

Living with the Retinoblastoma Cancer Syndrome Part 1: Understanding the Risks and Lifelong Care

For individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story.  In the first of this two-part series, Rb survivor Abby White explores what the risk is and who it affects, the challenge of establishing personal risk, provision of lifelong follow up care, and early detection of second cancers. With contributions from fellow survivors.