Last week the world’s foremost eye surgeons and cancer specialists gathered in Paris.

Top of the agenda at the International Society for Ocular Oncology meeting was progress in treatment for retinoblastoma (Rb), the most common eye cancer of childhood.

Fifty years ago, in every part of the world, retinoblastoma killed the majority of children born with it. Since then, medics have devised ways of saving these children’s lives, and often their sight too. Now, new treatments such as intra-arterial and intra-vitreal chemotherapy are helping to do the job with fewer side effects. Many of the people who helped make this happen were present at the conference in Paris.

Also present, this year in unprecedented numbers, were representatives from family groups and charities that are working on improving the lives of people with Rb. I, Jed Stevenson, attended the meeting on behalf of the Childhood Eye Cancer Trust (UK); others came from Rb groups in France, Germany, Italy, and the USA.

Distinctive achievements
Whichever country you come from, facing and battling a disease like Rb creates a certain kind of fellowship. But as you’d expect, each country has its own character and approach.

Germany’s KAKS has won many hearts by distributing special dolls to children who may be having an eye removed – Elli the elephant has an eye that can be detached and replaced. (If you know a child who deserves an Elli, you can request one here.)

France’s Retinostop has an equivalent doll; they have published a book, My New Eye, that follows a little girl and her cat ‘Tino’ as they confront enucleation, and life on the other side.

The US Retinoblastoma International aims to help people with Rb worldwide. (Daisy’s Eye Cancer Fund, whose work was showcased in a poster at the conference, is also doing great work internationally, with impressive achievements in Kenya.)

Shared strengths
As well as having individual strengths, the organisations represented in Paris share a lot in the approaches they are taking to fighting Rb.

Across all of the groups, close relationships with doctors are crucial. Every one of the organisations relies on close relationships with local Rb treatment centres. Indeed, one of the most important roles such groups can play is that of mediating between families and doctors – communicating concerns and explaining misunderstandings in both directions.

Another thing they all share is reliance on volunteers. It’s from the efforts of people carrying out sponsored walks, runs, bike-rides and bake-offs, arranging fundraising events, and spreading the word, that all of these charities derive their energy, and the bulk of their budgets.

The road ahead
As I left Paris, I reflected on the progress that doctors around the world have made in turning Rb from being something like a death sentence to being a treatable disease. It is little short of a miracle.

I also reflected on the work that remains – to ensure that as many lives as possible, and as much sight as possible, can be saved.

For all their skill and intellect, the clinicians who organised the Paris conference can’t do this alone. Families must also work to make it happen. And increasingly, they are joined in this struggle by societies that provide support and raise awareness.

Life-threatening disease either brings people together or drives them apart. The meetings in Paris were a great example of how common purpose can emerge in the bleakest of circumstances.

Jed is a CHECT Trustee and he blogs about his family here.

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