Cystic Fibrosis organisations in Australia provide support and services to people with Cystic Fibrosis (CF) and their carers and families. This is complemented by a commitment to research and a quality improvement program focussing on improved clinical care for people with CF.
Every four days a baby is born in Australia with cystic fibrosis (CF) and more than one million Australians are carriers of cystic fibrosis. Cystic Fibrosis Australia (CFA) is committed to improving clinical practice and patient outcomes through its quality improvement programmes and research with the aim of extending life expectancy from 37 to 50 years by 2025.
Cystic Fibrosis is a recessive genetic condition. It primarily affects the lungs and digestive system because of a malfunction in the exocrine system, responsible for producing saliva, sweat, tears and mucus.
In addition to working for a cure, Cystic Fibrosis Australia also provides support and advocacy to improve the lives of people with cystic fibrosis. Get involved by raising awareness about CF, participating in a fundraising event or volunteering.
Cystic Fibrosis Australia has established a consistent approach to advocacy across Australia and is now a subject matter expert for government, industry and the media.
The Australian Cystic Fibrosis Research Trust (ACFRT) is managed by Cystic Fibrosis Australia (CFA). Since 1989 it has funded more than 300 projects valued at over $6,000,000.
Visit the media room to browse through number of resources including media representatives, press releases and reports.
Get to know the amazing international and local speakers
Jane qualified at the University of Liverpool in 1996. She went on to specialise in sculoskeletal physiotherapy and was awarded an Msc in Manual Therapy at Manchester Metropolitan University in 2014. Jane is a member of the Musculoskeletal Association of Chartered Physiotherapists.
Jane currently has a combined role as advanced practitioner in Emergency Medicine, sports physiotherapist and external lecturer across musculoskeletal and cardiorespiratory masters programmes at Manchester Metropolitan and University College London.
Jane was first introduced to Cystic Fibrosis in 2004 whilst musculoskeletal lead physio at the Manchester Childrens Hospital and went on to work as an Msk CF specialist at the Manchester Adult CF centre from 2007-2014.
During the last 12 years Jane has developed screening and assessment strategies for children and adults with CF in order to identify and manage dysfunction of the external support systems including Msk and urinary incontinence. She has developed and taught musculoskeletal courses to CF specialist physiotherapists in the UK and maintains an active interest in the intricate relationships that exist between the respiratory, continence and Msk systems.
Stephanie D. Davis, MD is Professor of Pediatrics and Director, Section of Pediatric Pulmonology, Allergy and Sleep Medicine at Riley Hospital for Children at IU Health located in Indianapolis, Indiana. She was recently appointed Vice Chair of Pediatric Clinical Affairs for the Indiana University School of Medicine.
Dr. Davis graduated with a BS in Biology with honors from the University of North Carolina at Chapel Hill in 1989. In 1993, she graduated from Wake Forest School of Medicine. She completed her pediatrics residency and pediatric pulmonology fellowship at Riley Hospital in 1999. She then joined the faculty at UNC Chapel Hill and served as Division Chief before moving to Indiana in 2011. As Section Director at Riley Hospital for the past five years, the program has grown substantially with national recognition in clinical and research arenas. Research interests include investigations of early lung disease involving evaluation of tools or technologies to assess current disease and predict disease progression.
Dr. Davis is active in the American Thoracic Society and is currently serving as the Pulmonology representative for the Society of Pediatric Research Council. She also serves on the Pediatric Pulmonology Subspecialty Board for the American Board of Pediatrics and recently joined the Board of Directors.
Kris De Boeck is a paediatric pulmonologist and is head of the Pediatric Pulmonary and Infectious Diseases program at the University Hospital in Leuven, Belgium. She leads the CF reference center for cystic fibrosis at the University Hospital Gasthuisberg in Leuven, providing care for about 320 children and adults with CF. Kris De Boeck received her degree in medicine from the Catholic University of Leuven and earned her PhD with studies on pulmonary surfactant. She has been a full professor at the Catholic University of Leuven since 1999. She is a clinical researcher; her main interest lies in the field of cystic fibrosis and primary ciliary dyskinesia,
She has initiated several studies in Belgium and throughout Europe. Kris De Boeck is a member of the cystic fibrosis diagnostic working group that generated the European consensus on the terminology and diagnostic algorithms in cystic fibrosis. She participates in several European Union framework programs. On request of ECFS she realized the start-up of the European Cystic Fibrosis Society Clinical Trials Network (ECFS-CTN) and was its first director of the European Cystic Fibrosis Society Clinical Trials Network (ECFS-CTN). At present she is the president of the European Cystic Fibrosis Society.
In the past decade and with her Leuven CF team, her research interests continue to be around diagnostic issues in CF, outcome parameters (sweat test, nasal potential difference measurements, lung clearance index) for use in clinical trials and exploring personalized medicine with the use of organoids as a biomarker.
Cynthia is the Senior Director of Partnerships for Sustaining Daily Care at the U. S. Cystic Fibrosis Foundation. The partnership-for-sustaining-daily-care program is the CF Foundation’s strategic initiative to increase adherence to CF therapies. This multi-faceted initiative brings together adults with CF, families, care teams, researchers and others in the community to explore the challenges of fitting a complicated daily treatment regimen into everyday life, and to test practical, behavioral interventions aimed at supporting self- management. Prior to joining the Foundation, Cynthia was the nurse practitioner and coordinator with a key role in establishing an adult CF program in Washington, DC. In 2008, she joined the CF Foundation to lead a national effort to promote a culture of research within the CF community.
Charles Haworth is Director of the Cambridge Centre for Lung Infection at Papworth Hospital. He trained at the Manchester Adult Cystic Fibrosis Centre, the Royal Brompton Hospital and at Hammersmith Hospital, before moving to Cambridge in 2003. He co-authored the US CF Foundation and European CF Society NTM guidelines published in Thorax in December 2015 and is co-chair of the British Thoracic Society (BTS) NTM guidelines committee. He is also a member of the BTS bronchiectasis and European Respiratory Society bronchiectasis guidelines committees. He collaborates with Professor Andres Floto at the University of Cambridge on NTM related studies and is a member of the European Union funded iABC and CFMATTERS consortia. He is co-chief investigator of three current international novel therapy clinical trials in people with bronchiectasis. He is also the site Principal Investigator for the European Cystic Fibrosis Society Clinical Trials network and is a member of the CF Foundation Data Safety Monitoring Board.
Amanda Radmer Leonard, MPH, RD/LD, CDE, is an Advanced Nutrition Practitioner at The Johns Hopkins Children’s Center in Baltimore, MD, where she assesses patients with cystic fibrosis and educates staff, medical students, and the pediatric population on the topic of cystic fibrosis. She has been at Hopkins since 1997. Prior to this she worked as a pediatric dietitian at Tulane Hospital for Children in New Orleans, LA. Ms. Leonard also serves as Facilitator in the CF Nutrition Mentoring Program for the Cystic Fibrosis Foundation in Bethesda, MD, where in 2008 she assisted in implementing a full-scale, national nutrition mentoring program. She earned her bachelor’s degree in dietetics and nutritional science from the University of Delaware in Newark and went on to get her master’s of public health in nutrition from the Tulane School of Public Health and Tropical Medicine in New Orleans, LA. She is actively involved in the Cystic Fibrosis Foundation and serves as the nutrition subcommittee chair for the North American Cystic Fibrosis Conference Planning Committee. Ms. Leonard also served as the co-chair for the Evidence Informed Guidelines for Enteral Feeding in Cystic Fibrosis, published in 2016. She has published several articles in peer-reviewed journals including the Journal of Pediatrics, the Journal of Cystic Fibrosis and the Journal of Pediatric Psychology. Ms. Leonard has given more than two dozen national and international presentations on the topic of nutrition, namely nutrition for pediatrics, diabetes, and for patients with cystic fibrosis, at conferences such as the North American Cystic Fibrosis Conference, Brazilian CF Congress and the American Dietetic Association Food and Nutrition Expo.
Dr. Quittner is a Professor of Psychology and Pediatrics at the University of Miami. She received a Lifetime Achievement Award from the Cystic Fibrosis Foundation in 2008, was named a Cooper Fellow and then a Provost Research Scholar at the University of Miami. She will receive a national award from the CF Foundation in October, 2016 for her research on mental health in CF and her efforts to disseminate national screening. For the past 28 years, she has focused her research on cystic fibrosis and other rare lung diseases and has developed the first disease-specific quality of life measures for: CF, non-CF bronchiectasis, NTM, and primary ciliary dyskinesia. Several of these measures have been translated into over 40 languages and are being used in international clinical trials. She just completed an epidemiological study of depression and anxiety in 9 countries, screening both people with CF ages 12 through adulthood and parent caregivers. This led to the formation of the International Guidelines Committee on Mental Health, which has established national screening guidelines in the US and Europe. She studies adherence and recently completed a translational study of an adherence intervention at 18 CF Centers in the US—iCARE (I change adherence and raise expectations) to improve adherence in adolescents. She has been continuously funded by NIH and other granting agencies over the past 28 years and has published over 200 articles and book chapters.
Ben Saville is a Statistical Scientist for Berry Consultants, where he specializes in the design of innovative Bayesian adaptive clinical trials. He works primarily with medical device companies, pharmaceutical companies, and academic investigators to solve challenging problems via Bayesian designs, many of which are reviewed by the U.S. Food and Drug Administration (FDA). He is a frequent invited speaker at various statistical conferences, academic seminars, and lecture series, including short courses on adaptive clinical trial design. Dr. Saville earned his Ph.D. in Biostatistics from the University of North Carolina at Chapel Hill in 2008. Prior to joining Berry Consultants in 2014, he was an Assistant Professor of Biostatistics at Vanderbilt University School of Medicine where his methodological research focused on Bayesian hierarchical models, Bayesian adaptive clinical trials, and nonparametric methods for randomized clinical trials. At Vanderbilt, he collaborated extensively with medical researchers in the Department of Pediatrics and the Vanderbilt-Ingram Cancer Center, and was co-leader of an adaptive trials design workforce to promote innovative Bayesian methodology in clinical trials. In addition, he taught undergraduate and graduate courses in the Department of Biostatistics and Department of Biomedical Engineering. Dr. Saville has authored over 50 peer-reviewed publications in the statistical and medical literature.
Medical Director, Clinical Research Services
Co-Director, Adult Cystic Fibrosis Program
CF Therapeutics Development Director
Associate Professor, Departments of Medicine and Pediatrics
The Tuchman Family Division of Pulmonary, Critical Care and Sleep Medicine
National Jewish Health
Dr. Jennifer Taylor-Cousar is an associate professor of adult and pediatric pulmonary medicine at National Jewish Health (NJH), where she serves as the Medical Director of Clinical Research Services. She oversees the care of children with pulmonary disease and adults with cystic fibrosis. Dr. Taylor-Cousar is co-director of the Adult CF Program and Director of the CF Therapeutics Development Network research that is conducted at NJH. Her investigator initiated research focuses on the development and appropriate evaluation of novel therapies for the treatment of CF. She also is funded to determine the etiology of bronchiectasis in non-human primates.
She serves on the American Thoracic Society (ATS) Clinical Problems Programming Committee and as an Expert Reviewer on the CF Foundation Protocol Review Committee, and as an Expert Advisor on the on the CF Contraceptive Registry Development Group. She has co-chaired numerous sessions and given invited lectures at the ATS International Conference, the North American CF Conference and regional CF and pulmonary conferences as well at international veterinary conferences. She is an active member of the Colorado Chapter CF Board.
Dr. Taylor-Cousar received her undergraduate degree in human biology from Stanford University in 1993. She completed her doctorate in medicine in 1998, combined residency in internal medicine and pediatrics in 2002, and her combined fellowship in adult and pediatric pulmonary medicine in 2006 at Duke University Medical Center. Dr. Taylor-Cousar obtained her master’s in clinical science at University of Colorado in 2015.
Dr Susannah Ahern MBBS (Hons), MBA, FRACMA, PhD is the Head of the Registry Sciences Unit, Course Co-ordinator of the Masters of Health Services Management, Academic Lead for the Australian Cystic Fibrosis Data Registry, the Australian Thyroid Cancer Registry and the Australian Spine Registry based at Monash University, and is a member of a number of other Monash Clinical Registry Steering and Quality Committees. She has worked in many senior management roles including as the Executive Director Medical Services and Clinical Governance (Peninsula Health), the Medical Director of the Postgraduate Medical Council of Victoria (PMCV), and Director of Medical Services (Alfred Health). She has held Board positions with the Centre for Health Innovation (Alfred Health) and the Confederation of Postgraduate Medical Education Councils, as well as participating in a number of state and national committees relating to health services, and undertaking consulting in medical administration. Her academic interests include clinical registry governance and scientific methods, health service clinical governance, medical workforce and training, and clinical services planning. She is a regular reviewer for the international journal Medical Education regarding postgraduate medical training.
Andrea Barrett has been a Clinical Psychologist since 1995, and completed her training at Victoria University, Wellington, New Zealand. In 1999, Andrea moved to Western Australia and has worked primarily as a Senior Clinical Psychologist at Princess Margaret Hospital. In 2005, Andrea joined the Paediatric Consultation Liaison Program at PMH. She has worked closely with the Cystic Fibrosis team, providing assessment and treatment to many families with children who have Cystic Fibrosis, as well offering Clinical Psychology Consultation and Liaison to medical, nursing and allied health teams. Andrea is interested in early intervention and in particular, Infant Mental Health (IMH). She has chaired the Infant Mental Health Interest Group and has trained a number of staff across the organisation in the area of IMH practice in a tertiary hospital. Andrea is currently involved in research with the Cystic Fibrosis team, looking at the impact of a CF diagnosis on parental grief.
Professor Scott Bell is Executive Director – Research, MNHHS and a Senior Physician of the Adult Cystic Fibrosis Centre at TPCH (>300 patients) where he has worked since 1996. He is currently the Editor-in-Chief of the Journal of Cystic Fibrosis. He leads the Lung Bacteria Laboratory at QIMR Berghofer Medical Research Institute in Brisbane. Scott has over 180 peer reviewed publications and has received grant support in excess of $10 million over the past 10 years. His research interests include the CF microbiology, acquisition pathways for human infection and has a long history of supporting multi-disciplinary research.
Dr Cindy Branch-Smith is a senior research officer with the Health Promotion and Education Research Team and AREST CF at the Telethon Kids Institute in Perth. Her PhD studies explored parental experiences of early surveillance for CF lung disease and how parents cope with the regimen. Recently, she has focused on mental health for children and young people living with CF in the school context resulting in the development of an innovative smartphone App that will build resilience and promote social and emotional health in young people attending school. Dr Branch-Smith is also the Standards Monitoring Coordinator for the Office of the Chief Psychiatrist with the Western Australian government, where she oversees clinical reviews and monitors standards of psychiatric care across Western Australia.
Dr Brenda Button is currently employed at the Alfred Hospital as a senior clinician physiotherapist. She works full time as the Respiratory Physiotherapy Stream Leader, teaches undergraduate and postgraduate students in the clinical setting and supervises a number of PhD and Masters students. Her research interests include GOR in adults with chronic lung disease, the use of hypertonic saline, urinary incontinence in women and men with CF and COPD, exercise and exercise testing, airway clearance therapy, quality of life and adherence. She was successful in the award of a Churchill Fellowship which she undertook in 2015 receiving international training in the physiotherapy management of end stage respiratory patients treated with ECMO as a bridge to lung transplant. She has over 40 published peer reviewed papers and is frequently invited to teach airway clearance therapy in Europe and North America.
Ruth is the senior physiotherapist in the department of respiratory medicine at Royal Prince Alfred Hospital in Sydney. Ruth co ordinates the adult CF clinic, including inpatient and outpatient care and research (25 publications). Ruth has extensive experience in respiratory medicine (over 20 years) with particular interest in CF, airway clearance techniques and inhalation therapies, management post ICU, tracheostomy weaning and NIV. She enjoys the challenge of applying evidence based reasoning to clinical practice; the continuum of questioning, learning and teaching.
Dr. Rebekah Divakaran graduated from Monash University with an MBBS and Bachelor of Medical Science in 2013. Her honours research focused on adults with CF and workplace discrimination, with a particular emphasis on healthcare workers with CF. Subsequently, she was part of a team who drafted infection control guidelines for healthcare workers with CF- a special interest for her as she also lives with CF. She has participated in Victorian department of Health committees as a consumer representative, including the Cystic Fibrosis service mapping project advisory committee and the Cystic Fibrosis telehealth steering committee. She is currently undertaking specialty training in Anatomical Pathology.
Dr Katherine Frayman is in her final months of training in paediatric respiratory medicine at the Royal Children’s Hospital, Melbourne and a PhD candidate at the University of Melbourne and Murdoch Children’s Research Institute. She was awarded the Thoracic Society of Australia and New Zealand VERTEX Cystic Fibrosis Paediatric Clinical Fellowship in 2014, and an Australian Cystic Fibrosis Research Trust Postgraduate Studentship in 2015. Her PhD research explores the very long term outcomes following early infection and inflammation in cystic fibrosis lung disease, including the development of the lower airway microbiota in infants and young children with CF and its association with clinical outcomes.
Dr Shihab Hameed is a Staff Specialist Paediatric Endocrinologist at Sydney Children’s Hospital, Randwick, and Conjoint Lecturer with the University of New South Wales. His major research interests focus on the endocrine complications of cystic fibrosis, and in particular the early use of insulin therapy in CF. Dr Hameed is a lead investigator in the CF-IDEA trial, a multicentre randomized controlled trial of once-daily insulin detemir in CF, involving Sydney Children’s Hospital Randwick, John Hunter Children’s Hospital, Children’s Hospital Westmead, Lady Cilento Children’s Hospital Brisbane and Women’s and Children’s Hospital Adelaide.
Professor Adam Jaffé is the John Beveridge Professor of Paediatrics and Head of the School of Women’s and Children’s Health at the University of New South Wales, Associate Director of Research for Sydney Children’s Hospitals Network (Randwick) and a Paediatric Respiratory Consultant at Sydney Children’s Hospital, Randwick, Australia.
Professor Jaffé was appointed as Consultant in Paediatric Respiratory Research at Great Ormond Street Hospital for Children and the Institute of Child Health, London in 2001. In 2006, he returned to Sydney where he was previously a registrar at the Children’s Hospital, Westmead in 1994.
Professor Robert Jones AM, is the Director of the Victorian Adult & Paediatric Liver Transplant Unit, based at the Austin Hospital and the Royal Children’s Hospital and a Professorial Fellow of the University of Melbourne.
He graduated in Medicine from the University of Dunedin and the University of Otago and has Surgical Fellowships from the Royal Australasian College of Surgeons and the Royal College of Surgeons, Edinburgh.
He trained in renal transplantation at St Vincent’s Hospital, Sydney then Bristol followed by a two-year fellowship under Professor Sir Peter Morris in Oxford. Following visits to Professor Sir Roy Caine’s Unit in Cambridge, spent time as a fellow in liver transplantation under Professor Thomas Starzl in Pittsburgh.
He joined the Surgical Department of Professor Ken Hardy at the Austin Hospital, Melbourne and started the Victorian Adult & Paediatric Liver Transplant Programme in 1988. He now heads the Victorian programme and is actively involved in heptobiliary and pancreatic surgery.
Dr Keating qualified MB,BAO,BCh from NUI Galway in 1995. After attaining MRCPI he underwent specialist training in respiratory and general internal medicine. In 2007 he was awarded MD for research in interstitial pulmonary fibrosis. Gaining specialist accreditation in Australia he worked as a fellow in lung transplantation and pulmonary arterial hypertension in the Alfred hospital. In 2010 he became a full time staff physician in the Alfred hospital with a special interest in cystic fibrosis, pulmonary arterial hypertension and interventional bronchoscopy. He has a number of international peer reviewed publications and has spoken at national and international conferences on his speciality areas.
Jennifer is the Clinical Psychologist within the Cystic Fibrosis Unit at the Royal Adelaide Hospital. She applies a positive, contextual behavioural approach with her cohort of adult CF patients with a particular focus on developing goal-oriented behaviour, increasing engagement in meaningful life activities, and improving treatment adherence. She also works with CF patients experiencing chronic and acute mental health problems and maintains a private practice seeing clients facing a range of issues.
Jennifer has presented on the topic of treatment adherence to a range of forums and has conducted in-service sessions within the Royal Adelaide Hospital, as well as presenting to other chronic health groups.
Prior to training in clinical practice, Jennifer worked in organisational psychology, in particular in the field of coaching, training and organisational change. She is an experienced facilitator and has delivered a range of accredited training programs. Jennifer finds the contextual behavioural framework blends seamlessly with a coaching approach for many clients, and enjoys the diversity of client outcomes allowed for by these approaches.
Andrea Kench completed a double degree in Nutrition and Dietetics and Exercise Sports Science through the University of Sydney in 2009. She has since worked as a paediatric dietitian at the Children’s Hospital of Westmead in a number of clinical areas. Andrea has over 7 years experience in the area of Cystic Fibrosis and is currently the full time senior CF dietitian. Most recently Andrea has been involved in the revision of the NHMRC endorsed Nutrition Guidelines for Cystic Fibrosis in Australia and New Zealand and has presented these guidelines at the European CF Conference.
A/Professor Tom Kotsimbos has successfully combined multi-disciplinary specialist training in clinical medicine (Respiratory and Infectious Disease) with a strong commitment to basic science, translational and clinical research (MD, NHMRC funding, PhD trainees, innovative therapeutic strategies and clinical trials). Following his MD Thesis [University of Melbourne/WEHI], he was awarded the prestigious Canadian Ludwig Engel Research Scholarship which enabled him to undertake post-doctoral studies at McGill University [Meakins Christie Laboratories]. Upon his return to Australia he was appointed as a full-time Staff Specialist Physician at The Alfred Hospital with primary responsibilities in Adult Cystic Fibrosis care, Lung transplantation and General Respiratory Medicine. He is currently Associate Professor, Department of Medicine, Monash University and Deputy Director of the Adult Cystic Fibrosis Service in the Department of Respiratory medicine. He has over 150 international peer reviewed publications that span the clinical breadth and scientific depth of the art and science of respiratory medicine (H-index 33, Google Scholar).
Anne-Maree Leahy is an Educational Play Therapist and Certified Child Life Specialist. She has worked at Royal Children’s Hospital, Melbourne for 5 years in the Respiratory & General Medicine departments. She has a Bachelor of Behavioural Science and Graduate Diploma of Primary Education. During her time working on the Respiratory ward she developed a keen interest in supporting patients with Cystic Fibrosis to cope with their hospitalisation.
A/Prof John Massie is a paediatric respiratory physician at the Royal Children’s Hospital, Melbourne. He has a special interest in caring for children with cystic fibrosis and the respiratory complications of neuromuscular weakness. John is a Clinical Associate Professor at the University of Melbourne and Research Fellow at the Murdoch Children’s Research Institute. John is deputy chair of the RCH Clinical Ethics Committee and has published in the area of ethics and CF. His research interests in cystic fibrosis include diagnosis, newborn screening, genotype-phenotype correlation and community-based carrier screening. John worked in collaboration with VCGS to establish a cystic fibrosis carrier screening program in Victoria (2006), a program that has now screened over 30,000 people and expanded to include other diseases.
Anna Middleton has completed a Bachelor of Medical Science and Master of Physiotherapy at the University of Sydney. She has been a member of the Cystic Fibrosis team at the Children’s Hospital at Westmead for over 10 years and is currently the senior CF physiotherapist. Anna has worked at Macquarie University as a tutor/lecturer and in the development of the cardio-respiratory and paediatric physiotherapy courses for the Doctor of Physiotherapy program. She is currently completing her PhD looking at the effect of vibration training on muscle function and bone density in both CF and mitochondrial disease. Anna has a strong interest in research, particularly related to musculoskeletal impairments, exercise and bone health in cystic fibrosis.
Fiona Moran is a Senior Physiotherapist at The Royal Children’s Hospital in Melbourne. Fiona commenced working at The Royal Children’s Hospital in 2005 and has been part of the Cystic Fibrosis team since 2006. Areas of particular interest to Fiona include infection prevention and control, exercise testing and service delivery models. Fiona completed a Masters of Physiotherapy in 2008 and a Doctor of Clinical Physiotherapy in 2013.
Dr Jude Morton took up a full time role as Senior Consultant in Cystic Fibrosis at the Royal Adelaide Hospital in South Australia, leaving Monash Medical Centre where she was Director of Adult Cystic Fibrosis for the eight years. Jude has been involved in the care of people with Cystic Fibrosis and Lung Transplants for over 20 years in several centres across Australia including, The Alfred Hospital (Melbourne), The Prince Charles Hospital (Brisbane) and St Vincent’s Hospital (Sydney). She is a co-investigator for the clinical trials of new Cystic Fibrosis Therapies at The Royal Adelaide Hospital.
In October 2016 Dr Morton was nominated by CFSA and awarded the inaugural Cystic Fibrosis Australia Patron’s CF Centre Star Award for her dedication, compassion and inspiration to the CF community since moving to South Australia. Dr Morton was chosen from a highly competitive field.
Jude has a great interest in improving transition to Adult services and is privileged to be able to attend the paediatric clinics at Women’s & Children’s Hospital in Adelaide getting to know the adolescent patients before they transition to the adult hospital.
Mark Oliver is a Gastroenterologist at Royal Children’s Hospital [RCH] and Clinical Professor at the University of Melbourne. He completed his undergraduate training at the University of Sydney and clinical and research training at the Sydney Children’s Hospital and Alberta Children’s Hospital in Calgary, Canada. Mark maintains a busy clinical practice particularly in the areas of Cystic Fibrosis/Pancreas disorders, inflammatory bowel disease and Multi visceral organ transplantation in children. He is a member of the RACP, Royal Society of Medicine and the Australasian Pancreatic Group.
Dr (Keith) Chee Y. Ooi, MBBS, Dip Paeds, FRACP, PhD, is a Clinical Academic at the University of New South Wales and Paediatric Gastroenterologist at Sydney Children’s Hospital Randwick. He trained at The Hospital for Sick Children, Toronto, Canada. He is an internationally recognized expert in cystic fibrosis (CF), particularly in the areas of diagnosis and gastrointestinal manifestations of CF. He established and leads the CF gut research program at UNSW and Sydney Children’s Hospital Randwick. He has won multiple research awards, including the Dean’s Rising Star Award (UNSW Medicine) in 2015. He has published in high impact journals in the fields of gastroenterology (e.g. Gastroenterology, Am J Gastroenterology), cystic fibrosis (e.g. Thorax, Chest) and paediatrics (e.g. Pediatrics, JAMA Peds, J Peds). He has been invited to present at prestigious conferences including Digestive Diseases Week, North American CF Conferences, European CF Conferences and Australian Health and Medical Research Congresses.
Associate Professor David Parsons is the leader of the Cystic Fibrosis Airway Research group and Chief Medical Scientist in the Department of Respiratory And Sleep Medicine at the Women's and Children's Hospital; and a visiting Senior Lecturer in the Discipline of Paediatrics at the University of Adelaide, Robinson Research Institute. He has spent much of the past 25 years working to develop a gene therapy treatment for Cystic Fibrosis airway disease, to provide an effective prevention or treatment for the progressing early-fatal lung disease suffered by CF children, regardless of the type of CF mutation. He and his research team have pioneered gene therapy techniques able to correct the basic cellular defect that causes CF in mouse models. He initiated novel research into airway surface health using non-invasive synchrotron X-ray imaging techniques. Recently he has enabled establishment of a CF rat colony to provide a relevant lung model for CF treatment testing.
Anton is a Professor of Infectious Diseases and Microbiology, and is the Director of the Department of Infectious Diseases at The Alfred Hospital and Central Clinical School, Monash University. He completed his infectious diseases clinical training in Australia in 2005 and then went to the USA for four years and worked at the Harvard-affiliated hospitals; Beth Israel Deaconess Medical Center and Massachusetts General Hospital. He completed a Masters of Public Health at Harvard School of Public Health, and also completed a PhD in Infectious Diseases and Microbiology. His research interests are in hospital-acquired infections, antibiotic resistance, mechanisms of pathogenesis and infections in immunocompromised hosts. He is also an active clinician working in the area of hospital-acquired infections and transplant infectious diseases. He is a committee member of the Clinical Research Network of the Australasian Society of Infectious Diseases and the Taskforce against Multidrug-resistant Gram-negative Bacteria for the Australian Commission on Safety and Quality in Healthcare. He has received numerous national and international awards for his advanced research and contribution to Infectious Diseases and Microbiology.
Elizabeth is a full-time paediatric anaesthetist at the Royal Children’s Hospital, Melbourne.
She initially trained at St Vincent’s Hospital, Melbourne, where she pursued her interest in ultrasound guided regional anaesthesia. She finished training in Vancouver and Starship Children’s Hospital Auckland, where she learned to use ultrasound. She accepted a staff position at the Children’s Hospital in 2006.
She teaches ultrasound and vascular access to anaesthetists with the Society for Paediatric Anaesthetists in Australia and NZ (SPANZA), a private ultrasound company and at Children’s Hospital.
She has published chapters on Ultrasound Guided Regional Anaesthesia and Vascular Access for Anaesthetists. She became involved with vascular access at Royal Children’s in 2007, and formed a subspecialised group of Vascular Access Anaesthetists, involved with the decision-making, insertion, audit, policies and ongoing teaching and quality improvement in this area. She has been studying quality improvement science with Cincinnati Children’s Ohio.
Dr Bernadette Prentice is currently working as a paediatric Respiratory fellow at Sydney Children’s Hospital and will complete her physicians training at the beginning of 2018. She has a Master’s of Public Health and also works as Conjoint Associate Lecturer in The School of Women’s and Children’s Health at The University of New South Wales. Bernadette was awarded The Thoracic Society of New South Wales/ Vertex Paediatric Clinical fellowship award in 2016, which has allowed her to continue her clinical training and research in Cystic Fibrosis. Her current project is examining the Early Origins of Cystic Fibrosis-related Diabetes (“EOS-CFRD”) using Continuous Glucose Monitors in young children and she is working towards a career in clinical and academic paediatric respiratory medicine.
Dr Sarath Ranganathan graduated from the University of Sheffield. He undertook his fellowship in respiratory medicine at Great Ormond Street and the Royal Brompton Hospitals in London, UK and he was awarded a PhD by the University of London in 2003 for research in the field of infant pulmonary physiology. He is a leading authority on the role of infant pulmonary function testing in young children with cystic fibrosis and he continues his research in early detection of disease in cystic fibrosis as co-Director of the AREST CF collaboration.
Sarath was appointed as a consultant in respiratory paediatrics at the Royal Children's Hospital in Melbourne in March 2004 and has been the Director of Respiratory and Sleep Medicine at the Hospital since 2012. He also has adjunct appointments as Principle Fellow at the University of Melbourne and Head of Respiratory Diseases Research at the Murdoch Children’s Research Institute, Melbourne
Associate Professor Phil Robinson is a consultant in The Department of Respiratory & Sleep Medicine at the Royal Children’s Hospital, Melbourne where he has been the CF centre director and the paediatric chair of the Australia CF centre directors committee, as well as the pediatric chair of the CF SIG of the Thoracic Society of Australia and New Zealand. In 2008 he was co-editor of the Australian Standards of Care for Cystic Fibrosis and is currently working as an editor on the second version of the standards. He is a founding member of the AREST CF research group with an interest in structural changes seen on CT scanning. He is the founding medical chairman of The Royal Children’s Cystic Fibrosis Research Trust. Nationally, he has been a member of The Australian Drug Evaluation Committee (ADEC) of the TGA and a continued member of subsequent committees. He has a long-standing involvement in CF drug trial research spanning 30 years and his current research team has been involved in multiple multinational trials of mutational specific drugs.
Associate Professor Geraint Rogers is a microbial ecologist whose research focuses on the contribution of the human microbiome to health and disease. He is Director of Microbiome Research at the South Australian Health and Medical Research Institute and leads a research group at the Flinders University School of Medicine. Geraint developed the first microbiome profiling techniques to be applied to cystic fibrosis lung infections and has a longstanding interest how respiratory and intestinal microbiota influence clinical outcomes in patients with CF.
Born with cystic fibrosis, Lauren was 19 when she received a double lung transplant with less than 2 weeks left to live. Determined to live life to the fullest and help those in similar circumstances, Lauren created the charity ‘Gifted Life.’
“Gifted Life” is a not for profit organization using all forms of media to focus on raising awareness and support for mental health trauma in transplant recipients and those with chronic illness while creating peer support networks and endeavoring to increase organ donation rates.
Due to her work, Lauren won people’s choice and judge’s runner up in the 2016 Australian Women’s Weekly “Women of the Future” awards.
Andre Schultz is the Cystic Fibrosis Centre Director at Princess Margaret Hospital for Children. He is a clinician researcher who has specific interests in the airway surface liquid microenvironment and adaptive design clinical trials.
Professor Greg Snell MBBS FRACP MD OAM is currently the Medical Head of the Lung Transplant Service at the Alfred Hospital and Monash University. After completing his initial medical training at University of Melbourne, he completed the Will Rogers Clinical Fellowship in Lung Transplantation at the University of Toronto, Canada in 1992. He has been involved in the implementation of new techniques and technologies in lung transplantation, in particular the use of Donation-after-circulatory-death (DCD) lungs.
Stephen is a specialist in paediatric respiratory medicine at Princess Margaret Hospital for Children, Perth, Senior Principal Research Fellow, Telethon Kids Institute, NHMRC Practitioner Fellow. Graduated in medicine from Cambridge University, UK. PhD in physiology from University of Western Australia. Chief investigator with the Australian Respiratory Early Surveillance Team for Cystic Fibrosis. His interests include precision medicine as a framework for approaching early childhood disease and the role of the epithelium in chronic respiratory disease.
Jenna Stonestreet is a Senior Dietitian with the Adult Cystic Fibrosis Centre at The Prince Charles Hospital in Brisbane. Jenna is a member of the Australian and New Zealand Cystic Fibrosis Nutrition Guideline Authorship Group responsible for the 2017 Nutrition Guidelines for Cystic Fibrosis. She holds sessional lecturer positions delivering medical nutrition therapy presentations to students at the Queensland University of Technology and Griffith University. Jenna has a special interest into the impact of CFTR Modulators on nutrition outcomes, and enjoys acting as a nutrition resource person for the education, development and support of others involved in CF care.
Anthony Talbot is a clinical psychologist who has worked within the Alfred CF Service for over 5 years. He works with patients presenting with a range of psychological concerns, often in the context of significant illness, loss and existential distress. His approach is one of working sincerely with people on their own goals for achieving physical and mental wellbeing in the larger context of their life, relationships, values and strengths. His aim is to support people to adjust to their experiences, optimise their management of chronic illness, develop new coping skills and strengthen confidence to make changes. His approach integrates cognitive behavioural therapy, mindfulness, lifespan development and existential psychotherapy. He has a background in smoking cessation and health promotion. Other interests include loss and grief, motivational interviewing, developmental transitions and sexual identity and gay/lesbian issues.
Dr Rachel Thomson is a Thoracic Physician and clinical researcher working at Greenslopes Private Hospital and the Gallipoli Medical Research Centre in Brisbane. She also conducts specialised mycobacterial clinics at The Prince Charles and Princess Alexandra Hospitals. She has an international reputation for her research into lung disease due to nontuberculous mycobacteria. Her doctoral thesis entitled “Characteristics of nontuberculous mycobacteria from a municipal water distribution system and their relevance to human infections” was awarded a QUT Outstanding Thesis award. Her current research focuses on immunological and environmental aspects of susceptibility to NTM infection, characteristics of the lung microbiome in NTM, and improving treatment outcomes. She is actively involved with the Cystic Fibrosis units in Brisbane, both in research and management of patients with NTM infection.
Jim is Laboratory Head, Cell & Gene Therapy Group, Murdoch Children’s Research Institute (MCRI), Royal Children’s Hospital (RCH) & The University of Melbourne and heads a research group investigating inherited red blood cell disorders.
After receiving his PhD at the University of Melbourne, Jim undertook postdoctoral studies at the MCRI, where he established several unique cell-based assay systems and clinically relevant animal models of β-thalassaemia.
A major aspect of his research is the development and evaluation of genetic-based approaches to precisely edit the human genome in order to demonstrate proof of concept for alternative therapeutic strategies. More recently, his team’s expertise in β-haemoglobinopathies has enabled him to establish a new research program focusing on the innate immune dysfunction in β-thalassaemia, which represents a significant risk factor for disease-associated morbidity and mortality.
In 2006 Natalie completed a Bachelor of Nutrition and Dietetics degree at Flinders University and in 2007 completed an honours project in Cystic Fibrosis (CF) exploring the timing of enzyme replacement therapy in relation to a meal. Since then Natalie has been working as a CF dietitian at the Women’s and Children’s Hospital (WCH) in Adelaide. Natalie has been actively involved in many quality improvement projects including audits of nutritional and vitamin D status and implementation of annual review clinics within the WCH CF service. Natalie has presented project findings at both the North American and European CF conferences. Natalie is an active member of the Dietitians Association of Australia Special Interest Group and since 2013 has been actively involved as both a project facilitator and chapter author for the NHMRC endorsed Nutrition Guidelines for CF in Australia and NZ, which she recently presented at the European CF Conference.
Prof Rowan Walker is currently Director of the Department of Renal Medicine, at Alfred Hospital Melbourne, Program Director for Cancer and Medical Specialties at Alfred Health, and Adjunct Professor of Medicine at Monash University. He has been involved in numerous clinical trials in chronic kidney disease including dialysis and kidney transplantation. His other major interests currently are evidence-based medicine, clinical practice guideline development and implementation, quality improvement processes and the role of registries in clinical research. He is the current chair of the Registry of Kidney Diseases ROKD) Steering Committee. He has authorship/co-authorship on > 250 publications. He is the immediate past President of the Australian & New Zealand Society, and immediate past Chair of the Victorian Renal Clinical Network (VRCN), the VRCN Transplant Working Group and the Victorian Transplant Advisory Committee (VTAC).
Jo Watson has been a community advocate engaged in the areas of health policy, especially access to medicines, and optimal public health interventions, for several decades.
She was the Executive Director of the National Association of People with HIV Australia (NAPWHA) from 2002 to 2014.
She was appointed to the Board of Consumers Health Forum (CHF) in 2012, and has been the Deputy Chair since 2014.
Jo is the consumer nominee to the Pharmaceutical Benefits Advisory Committee (PBAC), since her appointment in February 2013.
In February 2017 she was appointed as the Chair of the newly formed HTA Consumer Consultative Committee, established within the Commonwealth Department of Health.
Dr Widger is a Paediatric Respiratory and Sleep Consultant and is the Director of Paediatric Respiratory Medicine at Sydney Children’s Hospital Randwick. He is also a conjoint senior lecturer at the University of New South Wales.
Dr Widger completed his Respiratory Fellowship at the Royal Children’s Hospital in Melbourne where he completed his doctoral research thesis in Cystic Fibrosis Related Diabetes. He recently cofounded the Australasian Centre for Personalised Cystic Fibrosis Medicine based at SCH which aims to establish a novel and innovative pathway for the discovery of new personalised therapies. Dr Widger’s research has focused on the early detection and treatment of CFRD.
Jamie Wood is Senior Physiotherapist for CF at Sir Charles Gairdner Hospital, Perth, and is a member of the Institute for Respiratory Health CF and Bronchiectasis Research Group. In 2010 Jamie was awarded a Sir Winston Churchill Memorial Fellowship to study physiotherapy for people with CF and bronchiectasis in England, Sweden and Belgium, and in 2013 was selected by the International Physiotherapy Group for CF to attend the Accredited Airway Clearance Instructors Course in Lisbon, Portugal. Jamie is currently undertaking a PhD at Curtin University investigating the impact of the integration of telehealth with usual care in CF. The first study in his PhD evaluated the impact of telehealth clinics on health outcomes in adults with CF in rural and remote WA. Further studies are investigating the usability and impact of a smartphone application used to report symptoms to the CF team on health outcomes in adults with CF.