top of page


Mission Statement - Charitable Objects   (Charity Commission England and Wales Charity Number 1085775)


The provision of funding for the employment of a scientific researcher to carry out research into rhabdomyosarcoma at such places and such times as the trustees deem appropriate and the dissemination of the useful results of such research for the benefit of the public.

  • Facebook
  • Twitter
  • LinkedIn
  • Instagram


These funds will primarily help advance research into rhabdomyosarcoma.  We aim to find better treatments to lengthen and improve the quality of life of these children and their families. Additionally, we want more effective treatments to be available at the point of relapse.  Ultimately, we would like to see treatments in place that can cure rhabdomyosarcoma safely.


September 2023


Here, at The Institute of Cancer Research (ICR), London, we are on the brink of making some major breakthroughs for children, teenagers and young adults with cancer – advances that can offer more young patients the chance of cure, and a better long-term quality of life. These breakthroughs are being made possible with the support of our donors, such as the Chris Lucas Trust.

Around three-quarters of children with cancer are cured of their disease, but that proportion has hardly grown in recent years, and survivors can experience life-long side-effects from harsh chemotherapy and radiotherapy. It has taken too long for young people to benefit from the kinds of targeted cancer treatment that have so improved outcomes for many adults with cancer – but thanks to the ICR and organisations like us, that is now changing.

A recent study, aided by the support of Chris Lucas Trust, reported that a simple blood test could help guide the treatment of children with the cancer rhabdomyosarcoma. Less than a third of these children who relapse or whose cancer has spread will survive. Researchers found that ‘liquid biopsy’ blood tests could pick up signs that a cancer had returned, assess the severity of the disease, and help guide choice of drugs.

Around three-quarters of the children assessed with blood tests before treatment showed key genetic changes in their cancers – some of which could have implications for the children’s treatment. The promising findings are part of an international collaborative pilot study which is already being taken forward into a large international clinical trial.

The study, led by Professor Janet Shipley, who leads the Sarcoma Molecular Pathology Group at the ICR, involved blood and tissue samples from 28 patients with rhabdomyosarcoma from different centres across Europe, as well as studies in pre-clinical models.

Researchers assessed whether measuring DNA shed by cancer cells into the bloodstream could track tumour progression and aggressiveness and be a faster and less painful alternative for children than traditional tissue biopsies.

After analysing the findings from the study, researchers believe detecting increasing levels of circulating tumour DNA in the blood predicts poor responses to treatment. Using liquid biopsies to monitor patients could successfully determine how well treatment is working and identify patients who may need further interventions.

“Liquid biopsies have the potential to transform how we monitor and treat children with rhabdomyosarcoma. We hope that these simple blood tests can become a less invasive alternative to tissue biopsies, and a key tool to help judge prognosis and guide treatment.

“Our early pilot findings suggest that liquid biopsies can detect early signs of relapse, assess the severity of disease and help guide choice of drug treatment. We’re excited to be taking these findings into an international clinical trial involving larger numbers of children, and we

hope we can realise the potential of using liquid biopsies to make children’s cancer treatment smarter and kinder.” – Professor Janet Shipley


Moving Foward
In Partnership with the ICR

(Institute of Cancer Research)

How Will We Do It?


By collaborating with a network of leading research institutions, paediatric sarcoma professional bodies and paediatric oncology hospitals to formulate clinical research that is focused on rhabdomyosarcoma and aligned to our research objectives, with a patient focus. Currently, this involves several research projects linked to the new FaR-RMS clinical trial that launched in September 2020 and is now available in 11 countries and 61 locations across the world. So far, 100 patients have been recruited to the trial. This involves building knowledge of the biology of the disease and focusing on identifying and testing new drugs that target known biological markers which lead to a poorer prognosis. Another focus, is investing in research projects with goals to create new treatments such as CAR T-cell therapy for rhabdomyosarcoma. In practice, this means providing funds for the salaries of key staff assigned to projects and the consumables/lab reagents required to undertake the research. Additionally, we work closely with the European Paediatric Soft tissue sarcoma Study Group (EpSSG)and are funding the roles of Scientific Project Manager and Statistician for the group.


By building a network of families impacted by rhabdomyosarcoma via the Arcs. This will enable families to come together to tell their story, pool funds for research, advocate for change and create family support groups. Families and patients are at the heart of our mission and we have an active community designed to ensure a long-term and sustainable approach. Our relentless passion, recognition of the power of collaboration and ability to support one another at any point of the journey are key drivers to bring about about change for children and young people diagnosed with rhabdomyosarcoma in the future.


By raising awareness of the experience of rhabdomyosarcoma through platforms such as Childhood Cancer Awareness Month every September. It is surprising to learn how little investment is made in to research for childhood cancers compared to adult cancers. Research and development budgets in pharmaceutical companies covers 60% for adult cancer drugs and close to zero for children. This is a complex area involving issues relating to politics, legislation and profitability. We aim to work with other childhood cancer charities and influential cancer research centres in order to lobby for changes that can help to maximise the opportunities to make progress understanding and treating rhabdomyosarcoma.


I'm always looking for new and exciting opportunities. Let's connect.


We Need Your Support Today!

bottom of page