Destigmatizing Vision Loss Within the Retinoblastoma Community

Vision loss is a major part of the retinoblastoma experience, but rarely discussed in depth within our community. Sassy Outwater-Wright explores the trauma of vision loss, the experience of living with reduced or no sight, and pathways to living well at every age and stage of sight-loss.

Damian

Always Life Before Eye – So Why Are Curable Children Dying?

Progress of eye-saving treatments for retinoblastoma is very exciting, but an increasing number of curable children are developing metastatic relapse and dying after eye-salvage therapy. With parent experiences woven throughout, Retinoblastoma survivor Abby White, asks why this is happening and what can be done to prevent it.

View from a rollercoaster about to drop down steeply towards a river bathed in sunlight and surrounded by verdure.

The Retinoblastoma Rollercoaster

The rollercoaster ride is unexpected, wild and frightening when a child is diagnosed with retinoblastoma. The greatest comfort is knowing you are not alone on the journey. Lori Baños, creator and moderator of the Facebook group Rb Moms, reflects on the experience, with insightful contributions from group members.

Two young girls, one Caucasian, one African, recline together on a blue sofa, smiling.

Challenging the Global Retinoblastoma Burden on World Population Day

July 11, World Population Day, focuses attention on the urgency and importance of population issues. Helen Dimaras Ph.D considers the effect of our expanding global population on the expected numbers of children who will develop eye cancer each year, and the provision of effective care to meet their needs.

Tree of Life - thr trunk of the tree is a DNA double helix

How DNA and Genetic Knowledge Changes Lives: the impact of genetic testing for five families affected by retinoblastoma

Retinoblastoma survivor and WE C Hope co-founder / CEO, Abby White, considers the central importance of DNA and genetic knowledge in caring for the child and family. She introduces us to Alice, Jamie, Megan, Rachel, Peter and their families, to find out how genetic testing can influence treatment, screening and lifelong care.

“Some journeys don't have endings, they lead to new beginnings. These are the journeys that lead to great adventures!” Alex Haditaghi from ‘Softly, As I leave her’ 2016. Quote set against background of sunrise painting a golden pathway over blue ocean, into a slightly clouded blue sky.

One Retinoblastoma World, A New Realm of Discovery

When Sandra Staffieri left Australia in August 2012 for a conference in Italy and a tour of retinoblastoma centres in North America, she had no idea how radically the journey would change her life and care at the Royal Children’s Hospital, Melbourne. Yet as she departed, the key destination was not even on her itinerary…

Through Our Eyes at One Retinoblastoma World 2017

Parents and survivors shared their thoughts on the “Through Our Eyes” wall at the One Rb World meeting in Washington D.C., 9-11 October 2017. These powerful insights were gathered anonymously via this website during September 2017, and highlight wide-ranging concerns.

One Rb World group photo

One Retinoblastoma World 2017, Washington D.C.

Focused on best care for all, One Rb World 2017 included the first ever US national Family & Survivor Day. The collaborative program covered awareness, treatment, parent advocacy, life-long care, research, child life and the pathway to progress for our global community.

A young boy is wrapped up in a hug from an Elmo character.

I Am a Child, Not a Case!

Children with retinoblastoma are much more than a medical specimen. To achieve complete cure, we must consider them as a whole person, not just an eye or a body to be treated. A single word can completely change our focus.

A child's hand grasps a gold ribbon. The child's hand rests in the palm of an adult hand.

Are You Childhood Cancer Aware?

Childhood cancer is the leading disease killer of children in developed countries; second most common among children aged 1 to 15 in developing countries. With statistics and insights from parents and survivors, we explore the realities around the world.