Alice’s Arc was inspired by Sara and David's daughter Alice who, at the age of 3, was diagnosed with stage 4 alveolar rhabdomyosarcoma.
She was diagnosed in March 2015 and had 20 months of intensive chemotherapy at Great Ormond Street Hospital (GOSH) in London and proton radiation at the University of Florida Health Proton Therapy Institute.
Alice spent one year in remission before her cancer returned in February 2018. She underwent 6 months of relapse chemotherapy at GOSH and a specialist surgical procedure with brachytherapy, known as AMORE at the AMC Hospital, in Amsterdam. She is currently cancer free and 7 years old.
Throughout their journey, Alice’s parents have become part of a worldwide network of medical professionals and families with children undergoing cancer treatments. They became increasingly aware of the lack of funding and clinical research into the treatment of children’s cancers. There are around 70 new cases of RMS in the UK each year and very few people are currently researching this type of tumour.
Sara and David said:
“Upon relapse, treatments tend to stabilise the cancer but they do not cure. There are very few treatment options available. We need to understand more about these tumours and find a way to cure rhabdomyosarcoma before more children are lost to the disease. This is why we are investing in the ICR’s research.
“We have been shocked and saddened at the lack of research in to childhood cancers such as rhabdomyosarcoma. It is very frustrating as a parent of a child with cancer and even more so now that Alice has relapsed with little hope of a cure.
“The money we raise now and in the future for the ICR, will contribute to better treatments and, one day, a cure for children diagnosed with rhabdomyosarcoma.
Tireless fundraising and support
We are hugely grateful for the support of parent-led charities like Alice’s Arc. We have recently received a generous pledge of £250,000 from Alice’s Arc towards our vital RMS research, headed up by Professor Janet Shipley at the ICR. Her team wants to improve the outlook for children by developing kinder treatments for RMS that are more effective and with fewer side-effects.
Professor Janet Shipley, leader of the Sarcoma Molecular Pathology Team at the ICR, said:
“Current treatments for rhabdomyosarcoma can cause severe side-effects in a child or a growing teenager. I am immensely grateful to our family charities, such as Alice’s Arc, for their tireless fundraising and support towards our research into more effective treatments, which could enable many young patients with the most aggressive forms of rhabdomyosarcoma to lead longer, healthier and more fulfilling lives.”
As part of their 'personalised medicine' approach, Professor Shipley's team is studying the molecular biology of RMS samples to develop more targeted treatments. The aim is to avoid damaging healthy cells when treating children.
This is particularly important for children because non-specific and toxic chemotherapy drugs can result in long-term side effects that can seriously impact a child’s development.
Meet the ICR’s team supported by Alice’s Arc:
Sarcoma Molecular Pathology Team
Sarcoma Molecular Pathology Team - Research overview