Osteosarcoma is the most common of the bone cancers affecting children and adolescents. It’s also one of the most common of the cancers that affects people with Li Fraumeni Syndrome (LFS). It was the cancer that ultimately killed my son George, and in the last couple of years we have also lost Lara Veitch, one of our first Trustees, and Henning Sablowski, our young German friend – both tireless advocates for LFS – as well as many others. Each a tragic end to young lives that deserved more. Unfortunately osteosarcoma is also one of those cancers that has seen no real improvements in outcomes for more than 30 years. There have been no great strides forward or big breakthroughs to report for a long time.
It’s clear that this is a disease that needs some concerted effort and a big push for change. This is exactly what FOSTER (Fight OSteosarcoma Through European Research) aims to do. It brings together oncologists, researchers, radiologists, patients, parents and others to work together across 20 countries. It has one overarching aim: To improve outcomes of patients with osteosarcoma, in terms of duration and quality of life of survivors. Already it has brought together almost 200 individuals and work has started on mapping out the concrete actions needed to make change happen. FOSTER will be looking at clinical trials for first time patients and for patients with disease that has relapsed or spread. It will include basic science streams so we can understand more about the biology of how it starts and spreads – so that we can exploit new knowledge in figuring out how better to target it with treatments. There will be focus on quality of life and long-term effects from treatment and survival. And more – all aspects of the disease will be included in the eight work packages already organised.
In short, FOSTER is exactly the sort of thing we need to be doing to pool resources, knowledge and skills to focus on a disease that desperately needs new thinking.
I am very happy to report that I have joined the executive committee of FOSTER – representing parents of children who have/had osteosarcoma. I can bring my personal experience of being a parent of a child with osteosarcoma, and LFS, and my scientific work in oncology to help make the changes that are necessary if we are going to finally produce some good news for this horrible disease.