10 different people’s arms reach inwards to clasp hands at the centre. They represent different races, and their sleeves are brightly coloured.

Multicentre Research Collaborations for Retinoblastoma

Retinoblastoma is a rare cancer, posing major challenges to researchers everywhere. In part 1/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores the many ways multicentre research collaboration can overcome these challenges and change patient care and outcomes – for the child, survivor, family and professional.

A woman sits alone on a bench under a sprawling weeping willow tree in a park. She is facing away from the camera.

Retinoblastoma Survivors’ Perspectives on Long-Term Follow up Care

Many retinoblastoma survivors live with significant long term treatment impacts and second cancer risks. Yet most children, adult survivors and their families struggle to access appropriate ongoing care. Len Burns, a totally blind bilateral Rb survivor and licensed family therapist, highlights the most common survivor concerns, and potential ways to improve long term care and quality of life.

2 people side by side at a wooden table, one working on a laptop the other writing in a notebook. Only their hands are visible.

4 Reasons Survivors and Families May Not Participate in Retinoblastoma Research, and Ways to Improve Engagement.

Survivor participation in retinoblastoma research is key to understanding long-term impacts of the cancer, and improving care. But many barriers to participation exist Len Burns, a blind bilateral Rb survivor and licensed family therapist, considers four major barriers, and opportunities to overcome them.

A long roads winds through rough country of valleys and hills.

Retinoblastoma Follow Up Care: the Long and Winding Road

Retinoblastoma follow up care is vital for all children after treatment, and for many survivors throughout life. The end of cancer therapy brings both celebration and uncertainty. Knowing what to expect can help calm worries and empower strong advocates. Child Life Specialist Morgan Livingstone reviews what follow up care may involve, and tips to help families and adult survivors navigate this stage of medical care.

A photo montage of three children with white pupil glow and turned eye early signs of retinoblastoma.

Retinoblastoma Awareness, Screening and Early Detection at One Rb World

Retinoblastoma awareness is the vital first step to cure! Early diagnosis leads to better outcomes for children, with less intense treatment. Sessions at every One Rb World explore how we can best raise parent, public and medical community awareness of common first signs, and develop effective screening for early detection. Below, we share sessions from the 2017,2020, and 2021 meetings.

A male African doctor looks on as a female surgeon uses a handheld digital camera to examine a boy's eye during an exam under anaesthesia. Both doctors wear surgical scrubs, masks, gloves, and caps. A laptop computer sits open beside the female doctor, but the images projected from the camera onto its screen are not visible in the photo.

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.

An ethnically diverse group of people sit together around a table, moving puzzle pieces. The photo is taken from above, and only the hands of the participants are visible.

Retinoblastoma Research: Types, Challenges, Opportunities

Retinoblastoma research is vital to understand how this cancer behaves; treatment benefits, side effects, and risks; and impacts throughout life.  Findings help guide medical and supportive care for the child patient, survivor, and family.  Rb Survivor, Abby White explores different types of medical research; their goals, benefits, and limitations; and opportunities to overcome the current challenges.

A faded portrait of a toddler Marissa and her grandmother, sitting together on outdoor steps.

Living With Vision Loss: Challenges and Changing Perspectives

For many survivors of bilateral retinoblastoma, vision changes throughout life. This may be due to treatment late effects, eye health, or other medical events. World Eye Cancer Hope USA President and founding board member, Marissa D. Gonzalez, recounts her journey with vision loss during two different seasons of life, and her difficult course with acquired blindness as an adult after decades of good sight.

Damian lies on a hospital bed, wearing a blue t-shirt with a red and yellow Team Damian logo that resembles the brand of his hero, Spiderman. He is bald and is smiling at the camera.

Under-Treatment and Over-Treatment of Retinoblastoma

Retinoblastoma care is a complex balancing act.  Some children receive too little treatment, while others receive more than necessary, with potentially devastating results.  Sharing two children’s stories, Rb survivor Abby White explores what under- and over-treatment are, when they may happen, their consequences, and how we can prevent them.

Fire Poppies – vibrant golden petals and green leaves brighten a scorched landscape.

8 Ways to Heal Survivor Guilt

Anyone affected by retinoblastoma can experience survivor guilt – child and adult survivors, siblings, parents, grandparents, and others. WE C Hope CEO and Rb Survivor Abby White concludes this four-part series on Survivor Guilt with 8 practical suggestions to help acknowledge, move through, and heal from the destructive emotions that fuel survivor guilt.