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 laptop to hold the hand of the person standing in front of it. The person standing is reflected in the screen of the laptop.

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.

One Rb World 2020 Banner. Background shows the Ottawa skyline at sunset. Above the One Rb World logo, text reads: October 3-4, 2020, Ottawa, Canada (struckthrough text) | Virtual Conference. At the bottom of the image, text reads “Hosted By” followed by four logos of World Eye Cancer Hope, the Canadian Rb Society, Canadian Rb Research Advisory Board, and International Rb Consortium.

One Retinoblastoma World 2020: Inspiring Global Support, Research and Action.

In October, a diverse community of survivors, families and medical professionals came together at One Retinoblastoma World for two days of inspiring panels, research and calls to action.  WE C Hope USA President Marissa D. Gonzalez shares a recap of the fifth global conference, and her vision for next year’s event in Hawaii.

A young lady reclines in a hospital chair, holding a cute grey elephant with big eyes, while a nurse takes a blood sample from her arm.

How to Communicate with People Who are Blind or Vision Impaired – Part 3: Medical Care and Support

Most children with retinoblastoma and survivors have some degree of sight loss, and many experience awkward healthcare interactions as a result. This 3-part series shares survivor and parent tips for medical professionals working with people who are blind or vision impaired, Part 3 focuses on medical care and support.

A man wearing dark glasses walks with a woman along a road, guided by his cane and his hand at her elbow.

How to Communicate with People Who are Blind or Vision Impaired – Part 2: Assistance, Access and Technology

Most children with retinoblastoma and survivors have some degree of sight loss, and many experience awkward healthcare interactions as a result. This 3-part series shares survivor and parent tips for medical professionals working with people who are blind or vision impaired, Part 2 focuses on assistance, access and technology.