Mike was diagnosed with IPF in 2005. We had never heard of it and information on the internet was frightening. As a family it was devastating as he had always been fit and active and had no other health issues. He was relatively stable for four years and then started to decline rapidly until by early 2010 he was very ill, on oxygen 24 hours a day and very restricted in what he could do. He was fortunate to receive a successful single lung transplant at Papworth hospital in June 2010. He resumed a more or less normal life until he suddenly became ill in late 2016, surviving only a few weeks.
Although often considered a rare disease, IPF is on the increase, with an estimated 30,000 patients in the UK. It has a poor prognosis, with average survival of 3-5 years after diagnosis.
During these six years, feeling so grateful to receive this life extension, Mike was passionate about helping others, raising awareness of the disease and supporting patients and their families. He was determined that others would not face the lack of information and support that we had.
We are a young charity and have been very delighted with how quickly we have been able to allocate a substantial sum for research. Two years ago we decided to set up a separate research fund. The amount we could raise for the fund depended on the support we had from donors and fundraisers. We are extremely pleased, after fewer than five years, to be able to provide £300,000 for research. In early 2017 it was decided that APF would offer these funds for a research fellowship. As the founding chair had recently passed away it was decided to offer it in his memory.
The charity’s vision is a world in which everyone affected by pulmonary fibrosis has a better future. All our trustees have either a personal or professional connection with the disease.
We work to raise awareness of pulmonary fibrosis, particularly Idiopathic Pulmonary Fibrosis (IPF), which is the more common form of the disease and has no known cause. We also support patients and family members living with the disease. Right from the beginning we aimed to fund research to better understand the disease and find better treatments and hopefully, a cure.
We are extremely pleased, after fewer than five years, to be able to provide £300,000 for research.
Although often considered a rare disease, IPF is on the increase, with an estimated 30,000 patients in the UK. It has a poor prognosis, with average survival for an IPF patient of 3-5 years after diagnosis. There has been relatively little research into IPF, despite the fact that 5,000 people die of the disease each year in the UK. There is, however, some hope with more research being undertaken over the last few years. This needs to continue and to expand.
There is greater awareness of IPF than there used to be, particularly for patients, through the increasing number of patient support groups around the UK. We are proud to have grown the number of support groups from a handful when the charity started to 50 and growing in 2018.
We need this to continue and APF will work hard to see that it does. We need to see much more work in increasing understanding of the disease by health professionals and amongst decision makers so that work that has been done, for example on the NICE Guideline 163 and IPF Quality Standard will be further developed and fully implemented across the UK.
Mike would have been honoured to have a research project in his name. Being a patient and understanding so well the effects of IPF on the patient, their family and friends, he worked hard to raise awareness and to encourage actions to improve the treatment and care for all IPF patients. This grant will help to contribute to these improvements.
Particularly, I hope that much more research will be carried out and real progress can be made in understanding the disease and its causes, so that effective treatments can be found, to ensure that those diagnosed with IPF do not endure the experience of Mike and our family.
Applications for the APF Mike Bray Research Fellowship have now closed. Please visit http://www.actionpulmonaryfibrosis.org/ for more information on IPF research and access to support.