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Press release posted 28 November 2024
A pioneering UK-wide study spearheaded by a courageous cancer patient and focused on a rare cancer called adenoid cystic carcinoma (ACC), has topped the £1 million funding milestone.
ACC is a rare head and neck cancer that primarily affects the salivary glands, with around 300 new cases each year in the UK. Despite surgery and radiotherapy, ACC often recurs and has limited effective treatments and no known cure.
Launched in 2019, The Ella Project was inspired by Ella Pinney - a mum of 2 from Wandsworth, London who was diagnosed with ACC at the age of just 33. Sadly, Ella died in December 2021, but she was determined to improve treatment options for future ACC patients.
Ella was a patient at the renowned Christie cancer centre in Manchester which is the only UK referral centre for patients with ACC with an active clinical and translational research programme where new treatments developed in labs have started to be used with patients. The Christie is also in the unique position of having the UK’s leading specialist in ACC, Dr Robert Metcalf, based at the hospital. This means the world is now looking to The Christie for answers about how to successfully treat ACC.
Dr Metcalf explains: “This research project is named after Ella because of her determination to change the outlook for patients with ACC. One of Ella’s biggest frustrations was the lack of understanding of her disease within the medical community. Although 1 in 5 cancers are classified as rare, they are less funded than common cancers. It is thanks to The Christie Charity and its recognition and support of groundbreaking research that we are able to continue what Ella started.
“One thing we know for sure about ACC is that it tends to recur following surgery. We also know that it is resistant to most drug therapies, but we’ve not known the most crucial part of the puzzle: how to treat it successfully. As part of The Ella Project, my role is to match patients to trials. Our research will help to prioritise which trials we can offer patients.”
Graham George is one of the patients who has become part of The Ella Project. Graham (46) from Haywards Heath near Brighton was first diagnosed with ACC aged 18. He has had regular operations and skin grafts ever since his diagnosis, as well as radiotherapy at The Royal Sussex Hospital. It was there that a consultant heard about the pioneering work by Dr Metcalf and his team and referred Graham to The Christie hospital.
Graham says: “Dr Metcalf and his team have been nothing short of amazing. They opened doors for me and referred me to The Royal Marsden, so I didn’t have to travel so far. I have my consultations online with The Christie, who discuss my treatment with The Royal Marsden and what’s best for me – currently I have immunotherapy every 2 weeks. They also informed me about The Ella Project and the important research that is going on in relation to ACC.”
“Dr Metcalf’s team has remained in contact with me ever since and I’m so grateful to both hospitals for the care and support that I’ve received.”
The Ella Project has been made possible by funding from The Christie Charity which has invested in an ACC research programme and established the world’s largest and best quality ACC biorepository at the Manchester Cancer Research Centre Biobank, which is a facility that collects, catalogues, and stores samples of biological material for laboratory research. This will form the foundation of future studies to help understand the biology of the disease and develop new treatments so that patients have more options.
Ella’s husband, James Pinney continues to support Ella’s legacy and says: “We are incredibly grateful to everyone who has donated to support The Ella Project and to Dr Metcalf’s team for their drive and hard work. Ella was desperate to improve the patient experience and outlook of future ACC sufferers, so to it is great to see the progress made through research and proactive alignment of the ACC medical community. We hope The Ella Project can continue to support research to lessen the knowledge gap between ACC and other more common cancers.”
The Ella Project aims to establish a global centre of excellence for ACC research and thanks to generous donations and dedicated fundraising efforts for The Christie Charity, it has made significant progress since it launched. The initiative has recruited top researchers, clinicians, and a national network of ACC specialists. It has identified new patient groups with specific ACC mutations, collected valuable data on patients' responses to immunotherapy and radiotherapy, and conducted a pilot study on fresh human tumour samples.
Research such as this is central to The Christie Charity's commitment to supporting The Christie hospital’s vision of ‘learning from every patient’ and trebling the number of patients participating in research by 2030. Studies have shown that cancer patients treated at research-intensive hospitals have better outcomes than those treated in hospitals with little or no research activity. The Charity has pledged to support and fund this goal with £30m over the next five years with the ultimate aim of bringing tomorrow’s treatments to patients faster.
For more information on The Ella Project and how you can help, please visit The Christie Charity.
To support the work of The Christie Charity, please go to Donate today or ring 0161 446 3988.
The Christie Charity supports the work of The Christie NHS Foundation Trust providing enhanced services over and above what the NHS funds. This includes money for care and treatment, research, education, and extra patient services. Gifts from the public make a huge difference to the care and treatment that The Christie is able to provide to patients and their families.