Alice’s Arc is dedicated to finding a cure and kinder, more targeted treatments for those affected by the childhood cancer, rhabdomyosarcoma. By working with major research institutions and leading paediatric oncology hospitals, we aim to fund research that contributes to advancing our scientific understanding of the biology of rhabdomyosarcoma and translates this knowledge into the identification of new drugs and pioneering treatments via clinical trials. This research is crucial in order to improve long term survival outcomes and to minimise long-term side effects.
The children and families impacted by rhabdomyosarcoma are at the heart of our mission and we work closely together to help achieve our goals. We have created a network of families and provide individual Arcs in honour of the children or young people’s journeys with rhabdomyosarcoma. These platforms have multiple purposes and are individually tailored to enable families to tell their story, fundraise, advocate and demonstrate the impact they are making.
In addition, we aim to be a major source of support to families, from diagnosis, treatment, post treatment, relapse, palliative care to loss and survivorship. We deliver this via our family well-being service and Arc’s family support groups.
Effective collaboration is critical in achieving change. Through our strong relationships with major research institutions, hospitals, clinicians and families, we present a global rhabdomyosarcoma voice advocating for change and a future where this disease can be cured safely, using new and cutting-edge treatments.
Alice’s Arc has no paid employees and very low overheads. So, whatever you can give or pledge, you know it will make a difference to a child with cancer.
Rhabdomyosarcoma is the most common soft tissue sarcoma occurring in children and young people and they tend to look like developing muscle or fibrous tissue.
It is a highly aggressive childhood cancer with 60-70 children diagnosed in the UK every year. It accounts for 5% of childhood cancer cases each year. Outcomes are influenced by the location, staging, fusion gene status and disease subtype. On relapse, the chances of survival fall to 8-20%.
The two main types are known as embryonal and alveolar rhabdomyosarcoma. Embryonal is the most common and makes up 60/70% of cases. It commonly presents in the head, neck, bladder, vagina, prostate or testicles and cells look like developing muscle cells of a 6-8 week embryo. Alveolar is more common in young adolescents and tends to occur in large muscles like the arms, trunk and legs. The cells look like normal muscle cells in a 10 week old foetus. It grows faster than embryonal and requires more intense treatment.
More recently, biological studies have found that the PAX-FOX01 gene fusion status of the disease could be important in predicting the outcome and treatment plan offered.
Current treatments at the point of diagnosis involve a combination of surgery (if possible), intensive chemotherapy known as IVA (Ifosfamide, Vincristine, Actinomycin) or IVADO (Ifosfamide, Vincristine, Actinomycin, Doxorubicin) maintenance chemotherapy and radiation (proton, photon, brachytherapy).
The Frontline and Relapse Study in Rhabdomyosarcoma (FaR-RMS) opened across the UK and Europe, in September 2020 with plans to open in other locations. The trial studies several aspects of treatment for the disease both for patients newly diagnosed and also at the time of relapse. It is open to patients of all ages across Europe. It has a multi-arm, multiple-stage design to identify early indications of benefit (or lack of benefit) of new therapies. Click here to learn more
A children’s cancer charity dedicated to funding research into finding a cure and less harsh treatments for Rhabdomyosarcoma.
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