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Phone
Alison Hey-Cunningham +61 2 9515 6651    

Email
alison.hey-cunningham@sydney.edu.au

Address
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 alison.hey-cunningham@sydney.edu.au 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.


Ralph Cromer

I live in Sydney in Randwick with my wife Julie and adult daughter Ruth who happens to have Down syndrome. We have a son who lives close by in Maroubra with his wife and 3 children. All surfing and biking people!

I was employed by IBM in London for 5 years in the 1960s, then at Lever Brothers in New York. On my return to Sydney I worked in computing and supply chain for Unilever until my retirement in 2003.

In 2013, I had a pacemaker implanted due to atrial fibrillation. I had a replacement pacemaker inserted in 2023 which now paces both my left and right ventricles. It was during a visit to my cardiologist in 2020 that he picked up the murmur in my lungs. My IPF was confirmed at RPA and I was invited to be part of the trial of inhaled Pirfenidone in May 2022. Instead of a tablet this trial delivers directly to my lungs by nebuliser. I feel very fortunate that I was invited to join this trial and to be a patient of the RPA Respiratory Clinic at RPA.    

To exercise I walk, swim and play an easy game of tennis with old mates. Living in an old house with a large garden also keeps us busy.


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 and pragmatic and passionate about connecting people and driving change. She is passionate about diversity and representation when considering consumer perspectives as well as supporting those with chronic illness to help them 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 on the board of Global Women Asia.

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


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.

Ted Moore

I am chuffed to have been invited to join the CRE-PF Consumer Advisory Group. I also have an ILD - having discovered in my case that our feathered friends were bad company. The disease has meant some restriction of physical activity but at my age, lots of activities are restricted! I have been retired since 2012 although have from time to time assisted a colleague in the City cope with his workload. Otherwise, the years have passed with alarming speed. I have been a lawyer for almost 50 years now and spent about 20 years in private practice and the last 20 years appointed as a member of a NSW Tribunal dealing with disputes between parties across a range of matters including consumer claims, retirement villages and residential buildings. The Tribunal is at present known as the NSW Civil and Administrative Tribunal. Whatever else I may have gleaned from my time as a Tribunal Member, I tried to be courteous and ensure the parties understood the rules of the hearing procedure, were given a fair hearing and whether happy or not with the outcome, understood the reasons for the determination. These aspects were particularly important in those cases in which parties were not legally represented. Although these skills were particular to my job, I hope they, together with my experience with ILD, may make a contribution to the work of the consumer group. I am looking forward to endeavouring to ensure that it does.


Deborah Murray

Since I was diagnosed with IPF in 2019 I have learned much about lung disease and the great gains research has made in this field. A fall at work resulted in an x-ray that led to further investigation and identification of IPF. This was a shock because I saw fatigue as an age issue not a condition that related to poor health. Lung rehabilitation was helpful for developing lung specific exercise options that ensure I maintain an active lifestyle and positive outlook on life.

I have three children, five grandchildren and two cats. My husband died from Melanoma in 2014. I live at North Avoca on the central coast of NSW in the house we built in 1978. Not much has changed with the house but the local area is now a populated hub of activity. Two families live in Sydney and one son lives nearby with his wife and two young children. Although I retired in 2017, I work two days a week and am fortunate to be able to continue with a dynamic life managing the IPF. I have held various roles in school-based and corporate positions at the Department of Education NSW. Currently I am at a local high school as a tutor and Beginning Teacher mentor. Working closely with young teachers is exciting and inspiring. 

Active participation in trials has embedded in me the importance and benefits of working collaboratively towards development of improved pathways for IPF patients and clinicians. I want to contribute to the gains this group can make to further research pulmonary fibrosis and I look forward to better outcomes for us all.


 

Brendan Pickles

I'm Brendan, currently 39 years old as of writing this in February 2024.

I have lived up and down the eastern side of Australia starting in Canberra, then Brisbane, moved to Melbourne to study now have settled in Albury with my wife Julia, child Winston, labrador, and two cats. I work as an Osteopath and am currently setting up my clinic in a residential area.

I was diagnosed in May 2023 on a personal hunch, my GP and a friend advised that I had some bi-basilar crackling in my left inferior lobe, he believed that this was a side effect of stress and Covid, however, I pushed for a CT and as a result they found fibrotic tissue with honeycombing. I've been told I have a very rare form of PF which is a side effect of a blood condition called hermansky-Pudlak syndrome (HPS). At this present moment, I'm the only one in Australia who has been diagnosed with this form of HPS PF.

Due to the nature of this disease, I'm hoping to get involved as much as I can with research and the community to try and help everyone who has been directly or indirectly effected by this insidious disease.


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.