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Alison Hey-Cunningham +61 2 9515 6651    


Centre of Research Excellence in Pulmonary Fibrosis
Respiratory Medicine and Sleep Unit
Level 11, Royal Prince Alfred Hospital
Camperdown NSW 2050



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Consumer Advisory Group

The CRE-PF consumer advisory group provide input at all stages of the research process, including development of research questions, research design and choice of patient-relevant outcomes, review of patient-facing research materials such as flyers and consent forms, interpretation of results, and promotion of findings.

The CRE-PF Consumer Advisory Group have been trained to assist with research. the group is co-chaired by consumer Tania Hyde and Prof Anne Holland. Contact the CRE-PF Project Manager via to find out more about how to seek consumer input for your research or joining the group.


Julie Allan 

Julie was introduced to Idiopathic Pulmonary Fibrosis (IPF) when her husband, Trevor, was diagnosed early in 2013. Since then she has been keen learn about the illness and ways of supporting him to have a good quality of life despite the impacts of IPF. In recent years, major challenges have been the impact of Trevor's increasing breathlessness on reducing his mobility and his need for constant access to oxygen supplementation. However, excellent medical support, modern technology and some forward planning have enabled them to maintain a fulfilling lifestyle as a couple. Since Trevor's diagnosis they have enjoyed several overseas ‘bucket-list’ trips and they continue to enjoy time with each of their 14 grandchildren. Julie is a retired Psychologist and has been involved in both clinical practice and research in a number of areas including the management of anxiety disorders, mood disorders, chronic pain conditions, drug and alcohol dependence, rehabilitation and work-life adjustment issues. Julie has taught in tertiary Psychology and other courses and worked as a Trainer focusing on mood disorders with the Black Dog Institute. She also has extensive experience working cross-culturally with a range of people from non-English speaking backgrounds. She appreciates the value of communicating research findings in ways that have practical application to everyday life.

Trevor Allan

Trevor Allan was diagnosed with Idiopathic Pulmonary Fibrosis in 2013 and became a patient at the RPA Pulmonary Clinic. He has been taking Nintedanib since July 2014, and his lung function remained stable for several years. Increasing breathlessness during 2020 led to a diagnosis of Pulmonary Hypertension and the beginning of 24/7 Oxygen therapy and more restricted lifestyle. Trevor is married to Julie, they have 6 children and 14 grandchildren. Trevor was medically retired from his role as the Head of Student Equity, Welfare & Disability Services at the University of Western Sydney (UWS) IN 2013. He was the Director of the Disability Services Centre at the Australian National University (ANU) from 1999 to 2007. Prior to this, he was the Regional Disability Liaison Officer for Northern NSW, the Community Educator for Headstart Community Access Program, the inaugural NSW Brain Injury Awareness Week Coordinator, ran his own video production company and was a High School English/History/Media Studies Teacher for 14 years. He was awarded Vice-Chancellor’s Excellence awards at both ANU and UWS and a Citation for Outstanding Contribution to Student Learning at UWS. He was made the first Honorary Life Member of the Australian Tertiary Education Network on Disability (ATEND) in 2014. In all these roles, Trevor has been actively involved in research and development of initiatives to provide enhanced practical outcomes for people. As a person who has personally benefitted from the research and clinical trials conducted by others, he is keen to contribute however he can to future research and development in this field.

Marcia Hooper 

I am retired and live on the Sunshine Coast in Queensland. I enjoy pursuits like knitting and reading and regularly catching up with friends and family. I have 2 beautiful daughters and 2 gorgeous and entertaining grandchildren. 

My IPF journey began in 2013 with an undiagnosed persistent cough. This worsened over time until I was finally sent for a chest X-ray and CT scan in 2017 which showed widespread fibrosis. A lung biopsy in November 2018 proved the diagnosis of IPF and I was able to start on Perfenidone. Several months later, I changed to Nintedanib. 

I have been fortunate to be included in several trials over the past few years and the support and data that extends from these is very reassuring and has helped me to further understand my disease. 

Being a member of the Consumer Advisory group allows me to reach out to other IPF patients and meet young researchers working on understanding IPF and its impact on sufferers. While everyone’s experience is unique, sharing our journey assists all of us to work together to improve outcomes and hopefully find a cure.

Tania Hyde

Tania is a strategist, connector and consultant with over 20 years’ experience in consulting and operations. She is simultaneously optimistic, pragmatic and passionate about connecting people and driving change. She is keen to make a difference in supporting those impacted by chronic illness to enable them to live their best lives. She runs her own consulting business advising clients in strategy and communications, before which she was the Chief Operating Officer of a boutique advisory firm, which has a focus on transport infrastructure and cities. She began her career as an electrical engineer in the Royal Australian Air Force after graduating from the Australian Defence Force Academy. She is a graduate of the Australian Institute of Company Directors and was an Asia Society Asia 21 young leader (2013). She is also the proud mother of two very active teenagers.

Tania co-chairs the Consumer Advisory Group with Prof Anne Holland.

Jeffrey Kerr

Jeff is 55 years old from Queensland and lives in the semi rural region of Samford which is about 40 minutes outside of Brisbane. He first encountered IPF when his father was diagnosed with the condition in 2010 and while nothing prepares you for the prognosis he had some insight into the disease when he was diagnosed 2019. Jeff has been amazed at the advances in treatment since his Dads passing in 2014, particularly with the availability of anti fibrotic medication in recent times and this has inspired Jeff to participate in a current clinical trial. He is passionate about the pursuit of improvements in treatment, patient & clinical information and other elements that combine to improve the quality of life for people with IPF, as the medical and patient community progress the quest for a cure some day. From a professional perspective, most of Jeff’s career has been focussed on the design, development and implementation of Human Services programs to support vulnerable people in our community. This has included management and executive roles in areas such as Housing & Homelessness, Disability Services, Aged & Community Care, Veterans Health, Child Safety, Domestic Violence, and most recently Rural Health. Jeff has undergraduate and post graduate qualifications in Business, Social Science, and Procurement but rates common sense above all else. Jeff has served on a number of boards and committees and hopes to make a contribution to the Consumer Advisory Group. In his personal life Jeff shares a busy home with Dea-Ann, his wife of 27 years and their three wonderful adult (or almost) daughters. It is spending time in this setting that Jeff values above all else. His other interests include most sport but particularly cricket, rugby league and rugby which up until a few years ago he was still playing in the very social golden oldies league. These days he prefers to exercise by going for a walk or a quiet paddle in his kayak, as well as a boxing training regime.

Bob Machar

My name is Bob Machar and I am a retired school teacher - have been so since 2010. I live on Sydney’s northern beaches. I am married to Vicky and have 2 sons - one lives locally and one in Zurich (he married a German girl). We have 5 granddaughters.

I was diagnosed with IPF in 2014, after presenting to my GP with a persistent cough. The first specialist I saw said I had maybe 3 years, and should look at getting affairs in order - was a bit of a shock to all. Ended up going to RPA, and can’t speak highly enough of the help and support I have received from all the staff there. I took part in an early drug trial and on completion of that, started on the drug Nintedanib. Since then I have been pretty stable and am able to lead a very normal life (apart from some side effects of drug). Have recently started a new drug trial with RPA, because I feel I want to give something back for all the support I have had from them. More side effects but not the end of the world. Reason for opting to join this group same as above - would like to give something back - not sure what, but hope I can offer something.

John Price

John lives with Alison in rural Western Australia in a coastal hamlet called Yallingup 3 hours south of Perth. He was first diagnosed with IPF in 2012 following an episode of constant coughing. He was sent home. In 2015 his brother became seriously ill and died with the disease and John recalled his first diagnosis of IPF. He was re-diagnosed and then the journey began with a specialist appointment, entry into a clinical trial (GB28547) in 2016 and then a second clinical trial (Celgene) in 2020. In early 2021 John had an acute exacerbation of his disease and was, after much testing, listed for transplant. Transplant took place in Oct 2021 and he received a single left lung. John recovered well and is incredibly grateful to the donor family, medical team and family and friends and lives to give them all the best possible outcome. His interest in all things IPF and Lungs stems from 2015 when he discovered a dearth of knowledge and resources available for patients and GP’s. John was a Director on the board of the Institute of Respiratory Health for 3 years. He also serves on the CRE-PF TEDS committee, the Rare Lung Disease Consumer Advisory Committee, and is involved with advocacy and peer support.

John grew up, was educated and commenced work in Melbourne. In 1973 John moved to Perth to become a Fashion Agent. Later there came a Newsagency, followed by investment into property and equities. In 2005 a decision was made to retire to Yallingup. John and Alison have three children, their spouses and 8 grandchildren to enjoy and love. He walks and swims regularly with a group of friends and in Feb 2023 completed his 14th Busselton Jetty Swim.