Our Trustees and Management team
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.
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.
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 until recently was 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.
Stephen has over 20 years’ experience as a planning and property consultant and is a recognised expert in commercial development and regeneration. He is a Director at a leading planning and economics consultancy in Manchester, having previously been Commercial Planning Director at an internationally renowned property agency. He is involved with some of the largest commercial development projects in the UK.
Stephen lost his dad, Tony to Idiopathic Pulmonary Fibrosis in 2017. Tony had suffered with the condition for five years, but it was not picked up from the beginning and this meant that, by the time it was picked up, it was too late for any long term treatment.
Stephen is honoured to serve at a Trustee for Action for Pulmonary Fibrosis in his dad’s memory. He is driven to raise awareness of IPF in the interests of both ensuring that clinical advances continue to be achieved and that early diagnosis is made in as many cases as is possible.
Stephen is a keen runner, and can often be seen in competitive races flying the Action for Pulmonary Fibrosis flag.
Dr Beckie Lang
Beckie’s background is in public health, having trained initially as a nutritionist and entering academic research following her PhD. She has always been an advocate of science communication and worked in this field in academic, corporate, media and voluntary sectors. Beckie has previously been a charity trustee and is currently CEO of PIPUK, a parent-infant mental health charity.
Her familiarity with IPF is through the diagnosis of her maternal uncle, Joe, and then her mum, Trish. More recently, an uncle on her dad’s side has also been affected. Sadly, all three have since passed away, following different journeys and at different ages. The hardest for Beckie, of course, was seeing her mum affected, undergoing a single lung transplant at the eleventh hour and then three years later passing away from transplant complications.
Beckie has been pleased to see the growth of APF over the last few years, and has taken part in fundraising for the charity to help in providing vital support and funds to raise awareness of the disease, support those affected and their families, and for research into the disease, its prevention, management and treatment. She is delighted to join the board of trustees to be part of its ongoing development.
Louise Wright, has for 20 years been involved in growing and developing charities in the UK. Originally working for a large marketing and advertising agency, where she supported clients like NSPCC and Guide Dogs to increase their income and more recently as CEO at a growing national charity that transformed the lives of people affected by paralysis.
Louise has a strong empathy for the cause, not least because of her personal connections to pulmonary fibrosis through friends and family.
Louise is currently Chair of a small international development charity working in Bangladesh.
Louise is delighted to be part of Action for Pulmonary Fibrosis and says “Pulmonary Fibrosis is a deadly disease, with little known about until diagnosis. The team at Action for Pulmonary Fibrosis are determined that no one should go through their journey alone and that one day we will find a cure. To be part of such a committed and talented team doing vital work across the UK and the world is a privilege.”