Mike Bray - Founder & former Chairman of APF
20th April, 1942 – 9th January, 2017
Mike Bray, together with his wife, Elizabeth, was the driving force behind the establishment of Action for Pulmonary Fibrosis in 2013. Mike had been diagnosed with IPF in 2005 and received a single lung transplant at the age of 68 in 2010.
He was passionate about fighting the patients’ corner and was instrumental in the charity becoming recognised as the authentic voice of the patient. He helped shape the vision and values that underpin everything the charity does in supporting patients and families, educating the wider world about the disease and raising funds for research.
His particular passion was helping to build a UK-wide network of support groups. He believed totally in the value and importance of support for patients and their families and travelled across the UK helping to establish new support networks. He used his experience as one of the founders of the first ever IPF support groups at Papworth Hospital. When APF began there were just a handful of groups; at the time of Mike’s death there were 38 and growing, a wonderful tribute to his commitment and tenacity.
Mike also helped launch the first European IPF Patient Charter during his time as chairman, which set out to raise awareness and improve treatments. He was also a fierce advocate for patients, making many contributions to NICE consultations on IPF and lobbying MPs and other key decision-makers. Just weeks before his death he was at a Parliamentary meeting with Stephen McPartland MP, Chair of the All-Party Parliamentary Respiratory Group, campaigning for better treatment for IPF patients.
Tributes paid to Mike include:
“ We met Mike when the Papworth group was first formed. He was a driving force. An absolutely lovely man, such a gentleman and an inspiration.”
“ I attended the European Parliament with Mike in 2014 when I was first diagnosed and was in awe of his work and dedication.”
“ Mike was a great inspiration to me. I will remember him as a selfless person striving to improve the lives of so many of us through his tireless work with APF.”
Karen Hughes, Chair of APF said:
“It has been a great privilege for us all to have worked alongside Mike as trustees. We have all benefited from the unique insight he had as a patient, his unstinting energy, generosity of spirit and determination to improve the lives of IPF patients. We are determined now to fulfil his vision for APF and honour his powerful legacy.”
Steve Jones worked for 35 years as an international development consultant specialising in social and economic problems of rural poverty in South Asia and Africa. He ran his own consultancy practice and worked for clients including the United Nations, the World Bank, the UK government and EU. He is now retired.
Steve was diagnosed with Idiopathic Pulmonary Fibrosis in 2008. For the first five years, the disease progressed slowly and he continued to work and led a reasonably full life. In 2013 his condition deteriorated. He was fortunate to receive a single lung transplant in March 2016.
Steve is currently Secretary and Vice-Chair of the Papworth Hospital Pulmonary Fibrosis Support Group. He is also a member of the Papworth Hospital Transplant Patients Support Group committee.
Steve was a founding trustee of a Cambridge charity – the Centre for Global Equality. He is also a Parish Councillor.
Steve is very pleased to have been asked to join Action for Pulmonary Fibrosis as Chair. He believes that further effort is needed to strengthen the network of support groups across the country and to reach out to people with IPF living in remote areas or who are otherwise isolated.
Wendy Dickinson is a former newspaper and radio journalist who also worked in programme publicity for the BBC for many years. She was Communications Manager for the family support charity, Home-Start and a former Trustee of Enrych (previously Ryder Cheshire Volunteers).
She still volunteers for the charity, supporting a young woman with cerebral palsy who is writing her life story.
Wendy’s father, Peter Taylor, a former professional footballer and football club manager with his friend and partner, Brian Clough, died of IPF in 1990, aged 62.
She is working with Action for Pulmonary Fibrosis in memory of her father and to help find an effective treatment and, one day, a cure.
Elizabeth worked in the further education sector for over 30 years, as a lecturer, curriculum manager, then leading college business development. This included working with partners across the UK and Europe to source significant funds for innovative training developments. For more than ten years Elizabeth was also a part-time inspector for Ofsted.
Interests in the local community have included membership of community and business organisations, director of Chamber of Commerce, parish councillor and charity trustee.
From personal experience with her late husband, Mike, she fully understands the course of IPF and the effects it has on the lives of patients and their families. She looks forward to continuing the work of raising awareness, improving the lives of patients and supporting research to better understand the disease and find more effective treatments.
Dr. Gisli Jenkins
Dr. Gisli Jenkins completed his medical training at University of Southampton before undertaking postgraduate training in Respiratory Medicine in London.
During this time he undertook basic scientific training funded by an ARC Fellowship and obtained a PhD in Biochemistry from UCL before doing postdoctoral studies at UCSF as part of an ARC Clinician Scientist Fellowship.
Currently Dr Jenkins is an Associate Professor and Honorary Consultant at the University of Nottingham. Dr Jenkins’ heads a laboratory focused on Pulmonary Fibrosis, and is also the Clinical Lead for the Nottingham Interstitial Lung Diseases Unit.
Dr Jenkins’ research focuses on the mechanism by which injury leads to scarring in the lung. Lung scarring is the central process leading to disability and death in people with Idiopathic Pulmonary Fibrosis, and also occurs in diseases such as chronic asthma where it promotes airway remodelling and impaired lung function.
Funding Dr Jenkins’ research group has received funding from Academic organisations including the Wellcome Trust, the Medical Research Council, Arthritis Research UK and Asthma UK as well as Industrial contracts with GlaxoSmithKline and Novartis.
Dr Helen Parfrey
Dr Helen Parfrey completed her medical training from the University of Oxford before undertaking her postgraduate training in Respiratory Medicine in Cambridge.
She was awarded MRC Clinical Training fellowship for structural biology studies leading to her PhD at University of Cambridge. This was followed by postdoctoral studies funded by Wellcome Trust Intermediate Fellowship at National Jewish Health in Denver, Colorado studying the role of TNF signalling in lung injury and fibrosis.
Dr Parfrey is a consultant respiratory physician at Papworth Hospital and lead for the Cambridge Interstitial Lung Disease Service. She has clinical and translational research interests in the role of innate immunity and infection in pulmonary fibrosis. She also has an interest in the genetics of familial and idiopathic pulmonary fibrosis.
Dr Parfrey is a strong supporter of patient advocacy having established the pulmonary fibrosis patient support group at Papworth Hospital.
Dr Simon Hart
Dr Simon Hart qualified from Edinburgh University and did his medical training in Scotland. His PhD investigated cell biology in lung inflammation and this led to further research funded by an MRC Clinician Scientist fellowship.
In 2008 he was appointed senior lecturer is respiratory medicine at Hull York Medical School and consultant at Hull and East Yorkshire Hospitals Trust where he is lead clinician for the interstitial lung disease service.
His research interests include inflammation and the immune system in pulmonary fibrosis and sarcoidosis.
Tony started work as an apprentice printer and later specialising in Quality Assurance progressing to the role of Head of Continuous Improvement at Opax International Ltd. As well as managing production facilities for Polestar he carved a successful career as a freelance Performance Management Consultant.
Diagnosed with IPF in 2012, he and his wife Jackie chose to retire and enjoy whatever time together they were afforded. Tony’s powerful writing had brought him to the attention of Action for Pulmonary Fibrosis where he became a regular blogger and our first Ambassador. He is currently Chairman of the Leeds IPF Support Group .
After his condition deteriorated throughout 2016 he was fortunate enough to have a double lung transplant in December at the Freeman Hospital in Newcastle.
Howard Almond has worked in the computer software industry since the late 60’s, with some 24 years in Austria and Germany. He is still active with developing computer software solutions and is also busy with his son’s Waste Management business.
He was carer for his mother for nearly 10 years until her death in 2013 of Dementia and is a strong advocate for better social and health care. He has been a town councillor in Dawlish since 2011, and is also Deputy Chair of Volunteering in Health, a leading charity in the care and wellbeing sector in South Devon.
Howard was diagnosed with IPF in 2014 and, whilst still relatively healthy, is determined to do what he can to help find better treatments and perhaps a cure for this disease.
He is delighted to have been asked to join Action for Pulmonary Fibrosis as a Trustee but believes that there is a lot of work to be done in raising awareness in the public domain as well as in the medical community.
John F Morgan
John is an IPF patient. Since retiring, John has devoted much of his time to charity work. He was also one of the founder members of the Papworth Pulmonary Fibrosis Patient Support Group.