Exeter Patients in Collaboration for Pulmonary Fibrosis Research (EPIC PF)

Our Project

We are raising funds to expand our research into the deadly lung disease pulmonary fibrosis (PF) which is the cause of 1% of UK deaths. We have lost friends and relatives to an early death from this disease. Research is underfunded and there is currently no cure. Please support our research and help us to change that!

Who Are We?

We are a team of researchers from the University of Exeter, working with clinicians from the Royal Devon & Exeter NHS Trust and pulmonary fibrosis patients and their families. Together we are all part of ‘Exeter Patients in Collaboration for PF’ or EPIC. Our agreed purpose is “To push PF research further together than any of us could do alone and to help find effective therapies, treatments and ultimately a cure. To do this in a way that is collaborative, mutually supportive and evolving.’”

Our Story

Peter (pictured) was one of our EPIC founder members. Click here to watch a two-minute video to hear our experience of his story.

Only a couple of years ago, he was healthy and very active, travelling widely, skiing and cycling. After becoming aware of a troubling and unusual breathlessness he was diagnosed with the relatively unknown lung disease pulmonary fibrosis. According to a recent study, there are an estimated 32500 PF patients in the UK and this figure is increasing each year. PF has a prognosis worse than many of the well-known cancers. Peter and his wife made it to only two meetings before he died. This makes us all the more determined to save people who are like him and his family from this dreadful disease.

Where will the money go?

It is planned that the direction of this research would be guided by the EPIC group members and that patients and their families would therefore have a vital say in it. If you would like to be a part of that, please contact us to join the group. Currently the group wants the research to be focused on finding new treatments, preventive therapies and ultimately a cure for PF.

£50 would pay for room hire and refreshments for an EPIC meeting for patients to learn about and guide our research
£100 would pay for a blood sample to be collected, with DNA stored long-term for future research
£500 would buy an antibody for use in lab experiments
£1000 would enable us to isolate and work with lung cells from patients
£2000 would provide an opportunity for an undergraduate summer student to do a 6 week research project
£6000 would pay for a nurse to complete a Masters qualification
£10,000 would ring-fence one day a week for a Clinical Fellow to carry out research over a year.
£20,000 would pump-prime a lab-based research project for a year
£30,000 would pay for a post-doctoral research scientist for a year
£60,000 would allow us to employ a full-time PhD student to carry out three years of research on an EPIC project

We have already raised some money to help fund these items, thanks to the generosity of patients, their families and friends. We as a team plan to raise funds in all sorts of ways and to become stronger together through doing that.

Help us succeed!

In the words of Howard, one of our patients shown above:

“At the moment, IPF is an incurable disease with no known cause, and an unpredictable progression, which slowly starves the body of oxygen. What is worse, it is often diagnosed incorrectly, or not recognised, so it is often too far advanced at diagnosis to be able to make use of the few therapies available to prolong life. There are so many areas for research, better diagnosis, early diagnosis, predicting progression, reducing symptoms and last but not least, a cure. It is important for us patients to help lead the direction of research and do what we can to facilitate research, help decide priorities, and also raise awareness.”

Please share the link to this page and help us to help them.

Keep in touch

You can contact Anna via ad653@exeter.ac.uk to find out more or to join our EPIC group.

Also find us in the Exeter Interstitial Lung Disease Team on Twitter @Exeter_ILD.

See our most recently published online research paper here Evidence of a cause of IPF

Together let’s #CureIPF !