The Ella Project - In loving memory of Ella Pinney

In March 2017, Ella went to the doctor with what she believed was an innocuous lingering cough. She was 33 years old, had always been fit as a fiddle, and was busy juggling an impressive career and being an incredible mother to her one-year old daughter, Olivia, and wife to her husband, James. We soon learnt that life was never to be the same again for Ella or her family.    

Ella was diagnosed with an advanced form of a rare cancer called Adenoid Cystic Carcinoma ("ACC"), in her lung. Within three weeks, she had undergone major surgery to have her right lung, pleura and a section of her diaphragm removed. The doctors hoped she would get a clear run for a number of years before any relapse so in her typical proactive style, Ella undertook the most heroic battle to regain fitness. She grew her remaining lung and generally worked hard to get her life back on track. The early progress was astonishing, but unfortunately started to tail off that summer as her pain levels significantly increased again. What was thought to be post-operative pain, turned out to be a relapse next to her spine. The disease was also identified in Ella's remaining lung. For the next four years, Ella endured endless different treatments including further major surgery, radiotherapy, brachytherapy, immunotherapy, targeted drugs and chemotherapy, whilst battling persistent chronic pain and the relentless other side effects. All this was done to try and stay around for her family for as long as possible. Ella fought so hard, and so graciously. Never one to complain, her bravery throughout was astonishing. During this period, Ella found the energy and strength to have a second daughter, Sienna, made possible by the support of her twin sister, Clare, who acted as the surrogate. 

In December 2021, Ella passed away leaving so many totally heartbroken. She will be remembered for her vivacious approach life, gracious unrelenting strength and uncompromising love of family. 

The greatest challenge during this whole period was the lack of hope. There is no known cure to ACC and as a rare disease, it does not benefit from the funding and coordinated research efforts that other cancers do. Ella was determined to do all she could to change this outlook, both for herself and other ACC sufferers. To date she has helped raise in excess of £1 million to support research into ACC. In 2019, Ella, with significant support from Infracapital, where she was formerly an Associate Director in Investor Relations, the Infrastructure Industry Foundation and Syncona, worked to set up The Ella Project. 

The Ella Project provides funding to the UK's leading ACC specialist, Dr Rob Metcalf, at the Christie Hospital in Manchester. To date there are three phases to the research, focused on: (i) DNA; (ii) immune cells; and (iii) live tumour samples. More information on these is provided below for those that are interested. 

ACC is an equal-opportunity disease that can strike anyone. It is not inherited, and is not associated with smoking, drinking, infection or ethnicity. It tends to afflict young and middle-aged people, with women being 60% of the sufferers. Any donations to The Ella Project will make a huge difference. Your support can help us take the next crucial steps towards finding more effective drug treatments for ACC. Please help us to help other families, so that one day there will be a cure for this wretched disease

Ella Project Details

ELLA01 - examining DNA

ELLA01 will look changes in the genes of patients with ACC. From this, we will then identify similarities. We have completed our focused analysis of 25 more common genetic changes across 125 ACC patient tumours. Donations to The Ella Project will enable us to increase this to all 25,000 genes in 225 patients.

ELLA02 - investigation immune cells

ELLA02 will investigate the characteristics of patients’ immune cells. We will see how these cells control the immune system and each patient’s response to cancer. This will help us understand which patients will respond to immunotherapies. For patients who won’t respond to this drug therapy, we can then work out what treatments we need to develop to help them.

ELLA03 - studying living tumour samples

In ELLA03, we will compare fresh samples of patients’ tumours with those that we have stored in our biobank. We will carry out the same investigations as in ELLA01 and ELLA02. But during ELLA03, we will receive a far richer, more detailed understanding of our patients’ DNA and immune systems. 

Combined, ELLA 01, 02 and 03 will help us match groups of patients with specific drug therapies. Once we’ve done that, the next generation of trials of new personalised treatments will begin within the next 3 years.