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.

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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.

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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.

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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.

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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.

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A fennec fox with a small round white face, dark round eyes and nose and very large ears is framed against the orange-brown desert of North Africa. Text above and below the picture reads “Tell me more… I’m all ears.”

The Gift of Listening to Ourselves: how compassionate self-enquiry can reduce stress and help us heal

We all need to be heard, but how often do we truly listen to ourselves? Living or working with retinoblastoma can be emotionally overwhelming. WE C Hope CEO and Rb survivor, Abby White, shares personal experience of some listening techniques that help her cope with daily challenging thoughts and strong emotions such as anger, fear and worry.

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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.

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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.

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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.

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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.

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