Our mission is to raise £5million to help children and their families impacted by rhabdomyosarcoma. We have already raised £1.6million since our inception . It is critical that these funds are spent in the most impactful and patient-focused manner.
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.
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.
A children’s cancer charity dedicated to funding research into finding a cure and less harsh treatments for Rhabdomyosarcoma.
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