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.

Two photo panels side by side. On the left, a baby boy is seen with the left eye turning in towards his nose. On the right, a baby girl has a red reflex in her right eye, while her left eye shows a dull creamy-white reflex.

Eye of the Storm: the impact of ‘not knowing’ on mental health

Retinoblastoma Awareness Week promotes life and sight-saving early diagnosis. Sandra Staffieri, Rb Care Coordinator at the Royal Children’s Hospital Melbourne, highlights the importance of raising awareness among parents, caregivers, health professionals and survivors; and how lack of knowledge and delayed diagnosis can impact children, parents, and adults with second cancer risk.

Lesley is sitting talking to a family in the hospital playroom. There are no other people in the frame. They are sitting at a round table, dad is holding his young son on his lap The child is wearing a Woody Toy Story character outfit, and laughing. Mum is sitting at the same table, wearing a green top and is laughing. Lesley is wearing a flowery top, is talking to the family and smiling. There are colourful toys on the table.

Childhood Eye Cancer Trust Support Workers: helping UK families and individuals through treatment and beyond

A retinoblastoma diagnosis is distressing for a family, its effects often lifelong. CHECT Support Workers help families and individuals in the UK, from diagnosis and throughout life. Support Service Manager, Lesley Geen, describes how CHECT Support Workers collaborate with the medical team to care for the whole family, and the different support services offered at each stage of life.

Sandra is pictured with two young children on EUA day. Mila is wearing a lilac tulle dress with a white long-sleeved shirt underneath, and white sandals. She is holding a pink unicorn and white teddy bear. Levi is wearing a white t-shirt and denim shorts, holding as soft lion toy. Sandra is squatting behind them, her arms wrapped around both children. She is wearing dark blue scrubs.

My life as a Retinoblastoma Care Co-ordinator

From the moment a child is diagnosed with retinoblastoma, even from when their parent first takes them to the doctor, life is a rollercoaster, a whirlwind of information, decisions, and grief. Sandra Staffieri describes her role as Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, how the role evolved, challenges faced, and the unexpected joys experienced despite it all.

A person's hands are seen typing on a laptop

Social Media Support: 10 Reasons Why Exchanging Medical Advice can be Unhelpful, and What to do Instead

When someone asks for support on social media, instincts drives us to offer hopeful solutions. But without full knowledge and understanding, we may cause more harm than help. Reviewing real interactions and their outcomes, WE C Hope CEO, Abby White, shares key points to consider when discussing retinoblastoma, and how to respond well.

A hand reaches through the screen of a computer to hold the hand of the person standing in front of it. The person standing is reflected in the screen.

Social Media Support: 7 Ways to Respond Effectively, and Why Our Responses Matter

How we respond to one another in retinoblastoma support forums, and the information we share, can significantly impact patient care and outcomes. Abby White shares 7 ways we can respond positively to any social media request for help, to improve communication, support, and best care for the child/survivor and family.

Flood: “Once you hear the sentence “your child has cancer” it is a constant flood till the end of treatment. It’s a flood of emotions, flood of information, flood of doubts, but in the middle of the flood you look at your child and you find the strength to keep your head out of water to survive.” Jackie, Mother of a Rb fighter. Image to the right shows a black and white photo taken underwater of a submerged woman wearing a long, white, sleeveless dress. Her face is above the waterline as her feet appear to be paddling and her arms extend to the sides.

Alphabet of Hope: Rewriting the Future of Retinoblastoma Care

After a year of publishing the #FamilyInSight Alphabet of Hope, we bring you the complete collection of 2020 Entries. This is the third #AlphabetOfHope. WE C Hope CEO, Abby White looks back at the alphabet’s genesis, and the insight, wisdom and motivation this literary project brings to the retinoblastoma community.

The words “Thank You” are written in script on a dark red background infused with light, surrounded by glowing red, gold and white love hearts.

Happy Holidays from World Eye Cancer Hope!

2020 has been eventful and challenging for the whole world.  Throughout, WE C Hope has continued to serve, unite and advance our global retinoblastoma community. WE C Hope USA President and retinoblastoma survivor, Marissa Gonzalez, reflects on the year’s highlights with thanks, and shares some plans for the coming year.