Text above reads: "Speak Up" Image of an open book, its pages glowing gold and emitting sparks of light. Text below reads: "Share Your Retinoblastoma Story."

4 Key Ways Sharing Your Story Makes a Difference, and Tips for Telling

Every individual in the retinoblastoma community has a unique story to tell – whether parent, survivor, sibling, professional, extended family member or supporter. Abby White explores the importance of storytelling, and the many ways in which sharing your story can make a difference – to your own life, and to the world.

Close up of a child with leukocoria detected by CRADLE, with results boxes around both eyes and magnified images of both eyes below the main photo.

From CRADLE to Care: Your Photos Can Help Scientists Build an App for Parents to Diagnose Serious Child Eye Disease Early.

A White pupil is the most common early sign of eye cancer in young children, and it’s usually seen first in photos. Do you want to turn your smartphone into a powerful cancer-detector? Mark Billings, WE C Hope USA Director, tells the story behind the CRADLE app and explains how you can help scientists improve it.

Close-up of a baby's face

How Do I Create A Family When I Have An RB1 Mutation?

Individuals who carry an RB1 mutation have a 50% chance of passing the retinoblastoma cancer syndrome on to each child.  Melissa Mills, bilateral retinoblastoma survivor and genetic counsellor, explores the psychological and physical impacts of this experience, and the different routes to creating a family when a prospective parent has an RB1 mutation..

An African doctor looks on as another uses a handheld digital camera to visualise a child's eyes during an exam under anaesthesia.

TNM Staging System for Retinoblastoma

Retinoblastoma is staged to help doctors describe the extent of cancer in a child’s body, define potential for cure, vision and eye salvage, identify the best treatments, and compare impact of different therapies. Dr. Ashwin Mallipatna explains the TNM Staging System for Retinoblastoma and why it is the best approach for patient care.

A baby boy looks at the camera. his right eye shows a white reflex while his left eye is turned in towards his nose.

When ‘Something’ Looks the Same As ‘Nothing’: Strabismus, Leukocoria and Childhood Eye Cancer

Strabismus (turned eye) and leukocoria (white pupil), the most common signs of retinoblastoma, can also occur in healthy eyes. Sandra Staffieri, Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, examines both and answers the key question – when should parents and doctors be concerned?

Dr. Skalet examines a child under anesthesia using an indirect ophthalmoscope. Published with permission.

Familial Retinoblastoma Screening: When Eye Cancer Runs in the Family

Familial retinoblastoma affects more than one member of the same family. Diagnosing children early provides the best opportunities for life and sight-saving care. Alison Skalet, ocular oncologist and director of the Rb service at Casey Eye Institute, Oregon Health & Science University, explores opportunities for early diagnosis when a parent, sibling or other relative has already been diagnosed.

Latifa and her mother

Retinoblastoma in Ghana: Saving Children’s Life and Sight

Just 3 paediatric oncologists serve Ghana’s population of 29 million, but this dedicated team leads one of the best childhood cancer programs in West Africa. Dr. Vera Essuman (paediatric ophthalmologist) and Prof. Lorna Renner (paediatric oncologist) discuss retinoblastoma in Ghana and the development of care for children with eye cancer across the country.

This image features two pieces of text, above and below an image of a stick family, ranged in order of height from the tall father through mother and various children to the family dog. Above: “When a child is diagnosed with cancer, the whole family is affected.” A gold ribbon sits behind the word “diagnosed”. Below the family: “Please support a local family in your community who has a child battling for their life. Bold for gold! Childhood cancer awareness and hope.”

Talking About Your Child’s Cancer Diagnosis With Family and Friends

Talking about a child’s cancer with family and friends can be deeply cathartic for parents one day, and utterly exhausting the next. Asking for and receiving help can be a minefield too. Morgan Livingstone CCLS explores why this is so, and offers tips and tools to reduce stress, improve coping and boost effective practical support.

a baby plays with an anaesthetic mask

10 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.

Do you know the difference between a biopsy and pathology, or an RB1 gene deletion and Chromosome 13q deletion? Do you know how a retinoma becomes retinoblastoma or when remission becomes cure? In Part 2 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.

A baby has a squint - the right eye is rutned in towards the nose.

8 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.

Do you know the difference between lazy eye and squint, or an ocular oncologist and a paediatric oncologist? Do you know when extraocular Rb becomes metastatic, or why trilateral Rb is neither of these? In Part 1 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.