An illustration of a syringe holding medicine. The syringe casts a long shadow in the shape of a dollar symbol.

Investing in Hope: The Quest to Fund Retinoblastoma Research

Research funding is vital to improve retinoblastoma early diagnosis, life and sight-saving treatment, family support, survivor care, and cancer prevention. But securing the funds for rare cancer research is very tough, often demoralising for researchers and clinician-scientists. Three retinoblastoma researchers share their experience, and two organizations helping to drive Rb research forward invite you to help.

A group of people representing diverse ethnic backgrounds are sitting or standing around a table scattered with post-it notes. They are deep in conversation, and several are reaching out to move post-it notes into new positions on the table.

United Against Retinoblastoma: The Importance of Global Data and Collaboration

Understanding how retinoblastoma affects children is critical to improve diagnosis, treatment, support and outcomes for all.  Mattan Arazi, M.D and Ido Didi Fabian, M.D., MPH, world-focused ophthalmologists from Sheba Medical Centre, Israel, explore why global data and collaboration are so important in Rb research, and the knowledge, progress, and hope they are building for families and professional teams worldwide.

The silhouette of a medical caduceus symbol features two snakes winding around a winged staff. A weighing dish hangs from each wing. The scales are in balance.

Unveiling Shadows: Cognitive and Unconscious Bias in Retinoblastoma Research

The human mind can subtly influence scientific research, with potentially serious consequences for patient care and outcomes. Rb survivor and WE C Hope CEO, Abby White, explores the nuanced world of cognitive and unconscious biases in retinoblastoma research, and strategies that can minimize their impact to ensure objective research and the best care possible for all.

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.

Multicentre Research Collaboration: the Challenge and the Light

Multicentre research is complex.  Challenges can arise in the process of bringing its  many benefits to patients, families and professionals. In part 2/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores common challenges, with solutions for each, and how our childhood cancer community encourages healthy, successful collaborations.

Drawing of a distressed looking woman in a blue shirt with one hand in front of her face and the other held up beside her head, fingers splayed. The background of cyan blue circles, swirls and clouds has a tangle of thin circles and stars surrounding her head, indicating that she is distressed or confused.

Beyond Stress: PTSD Symptoms, Resources, Strategies and More

Retinoblastoma is highly stressful for most patients and their families.  Too often, it is a traumatic life experience that has long term impacts on mental health.  Jules Verdugo, child life & pediatric psychosocial care student, looks at the difference between normal stress reactions and PTSD, symptoms, how to get help, resources, some strategies for managing symptoms, and post traumatic growth.

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.

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

Global Eyes: Connect, Communicate and Collaborate for Cure

Sharing knowledge and experience, and working together, are vital to build better retinoblastoma care. WE C Hope CEO, Abby White, highlights two key meetings on the horizon that will unite professionals, scientists, and parents and survivors who live with the impacts of childhood eye cancer, to advance care for all.

Headshot of a young child, around 18-months old, with a blue and white pacifier in their mouth. There is the characteristic yellow-white glow in the pupil of their right eye, commonly seen in retinoblastoma and Coats’ disease. Text reads “Early diagnosis is the best cure”

“Have We Spoken Before?” Same Retinoblastoma Diagnosis Story, Different Parents…

Many families tell of delayed pathways to care when their child is diagnosed with eye cancer. Orthoptist and retinoblastoma care coordinator, Sandra Staffieri, and leukocoria awareness advocate, Megan Webber, are frustrated by the repeated stories and their negative patient impacts. They explore why these delays continue, some efforts to overcome the challenges, and where they find hope for the future.

A diverse group of people sit around a table talking. The table is filled with papers and classes of water, and more people are seen working together around tables in the background..

Ethnography: A New Frontier in Retinoblastoma Research

Every child with retinoblastoma, parent, sibling, survivor, and medical professional has a story to tell of their journey through childhood eye cancer. Understanding our individual and collective experience empowers us to develop and deliver holistic care for all.  Rb survivor and WE C Hope USA Director, Clayonia Colbert-Dorsey discusses the growing field of ethnography research, and how it can positively impact our diverse global community.

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.