The Committee
Who We Are
Jessica Betterridge
President
Jessica has been involved in the Porphyria Association for several years, having undertaken the President role for six years. She joined after having personal experience with acute porphyria. She is passionate about research, education, and access to treatments within the Australia and New Zealand. Jessica has spoken at many international and domestic conferences about the importance of research and patient advocacy.
Jessica is a Graduate Architect working on large scale health and laboratory projects.
Sean Hegarty
Vice-President
Sean has a particular interest in porphyria due to a personal experience of Hereditary Coproporphyria, one of the acute porphyrias. He first came into contact with the Porphyria Association when seeking information about porphyria for himself and a number of family members.
Sean is a registered Occupational Therapist who has worked in the mental health sector since 2006. He is currently General Manager of Mental Health Services, Victoria & Tasmania at Wellways Australia.
Amy Schnider
Tresurer
Amy Schneider completed the Master of Genetic Counselling program at The University of Melbourne and leads the clinical research team at the Epilepsy Research Centre in Melbourne, Australia. She is involved in various translational research programs investigating the genetic basis of epilepsy and associated conditions. As head of the Epilepsy Research Centre’s developmental and epileptic encephalopathy research program, she has extensive experience liaising with families, performing deep phenotyping and identifying genetic diagnoses for families.
Sean Hegarty
Vice-President
Sean has a particular interest in porphyria due to a personal experience of Hereditary Coproporphyria, one of the acute porphyrias. He first came into contact with the Porphyria Association when seeking information about porphyria for himself and a number of family members.
Sean is a registered Occupational Therapist who has worked in the mental health sector for the past 11 years. He is currently General Manager of Mental Health Services, Victoria & Tasmania at Wellways Australia.
Wolfgang Haehr
Educational Officer and Secretary
Wolfgang has been our secretary and educational officer since 2015. He has a Bachelors degree in Biomedical Science as well as Honours and Master's Degree in Health and Medical Research. Wolfgang works on our content creation, manages the charity information, writes grants and works on a range of projects including website development and conference hosting.
James Clark
Community Outreach Officer
James is a volunteer undertaking the role of community outreach officer for the Association. James operates the Association contact phone and email. He works with patients and families affected by porphyria who are looking for information and support. His role also includes organising community outreach programs and assisting in general organisation management.
James has a Bachelor of Science from Monash University, a Postgraduate Diploma of Counselling at Swinburne University of Technology and a Master of Genetic Counselling from the Univeristy of Melbourne.
Andrew Smith
General Committee Member
Andrew has worked as an Occupational Therapist in the cancer sector for the past twenty years including senior roles in clinical care, management and service development across a variety of healthcare settings. He has worked in some of the country’s leading cancer organisations including the Peter MacCallum Cancer Centre, Olivia-Newton John Cancer Centre, Epworth Healthcare, Australian Cancer Survivorship Centre and Leukaemia Foundation of Australia.
Andrews interest in Porphyria stems from his role as a carer after his partner was diagnosed with Acute Intermittent Porphyria in early 2022. Born and raised in Melbourne, he is an AFL tragic who loves all things sport and spending time with his young family.
Medical Advisory Board
Prof. Edward Janus
Professor Edward Janus is a Melbourne based Consultant Physician and also a Pathologist with a long-standing interest in Porphyria and other inherited disorders. He trained in New Zealand and London undertaking research for his MD thesis on inherited lung diseases and PhD thesis on inherited lipid disorders which cause early onset heart disease. While training in laboratory medicine he learnt to test for PBG and porphyrins. He has been an active supporter of patient organisations such as the Familial Hypercholesterolaemia Foundation, the Alpha-1-Foundation and the Porphyria Association and has attended their conferences. He has a strong commitment to these organisations in which affected individuals, their families, doctors, laboratory staff and researchers meet and learn from each other and advocate for research and improved treatments as well as for funding for patient care including innovative medications.
Dr Gayle Ross
Gayle Ross is a consultant dermatologist with a special interest in porphyria. She is the lead clinician in the multidisciplinary porphyria clinic at Royal Melbourne Hospital, where she has worked since 2007. She was awarded the Australasian College of Dermatologists Travelling Fellowship in 2007 as the top graduate in Australia in the final dermatology examinations. She trained with leading porphyria experts in London, and has been Prinicipal Investigator in multiple clinical trials in porphyria including afamelanotide, givosiran and dersimelagon. She is the former Director of Training for the Victorian Dermatology Training Program, and recipient of a Presidential Citation for service to the Australasian College of Dermatologists.
A/Prof. Max Wolf
Max Wolf is a consultant haematologist at the Peter MacCallum Cancer Centre as well as in private practice in Cabrini Hospital and Epworth Hospital in
Melbourne. Max has been in the treatment of patients with a range of haematological malignancies and his major clinical and research interest has been in Hodgkin and non-Hodgkin’s lymphoma. He is past chairman and life member of the Australasian Leukaemia and Lymphoma Group (ALLG), the co-operative group which conducts clinical trials in haematological cancers in Australia. In recent years Max has developed an interest in management of patients with porphyria in the private setting.
Dr Cindy Towns
Dr Cindy Towns PhD MBChB FRACP is a General Physician, Geriatrician and Clinical Ethicist based at Wellington public hospital in Wellington, New Zealand. She is also a senior clinical lecturer with the University of Otago. In additional to the porphyria association, she also sits on the ethics committee for the Royal Australasian College of Physicians and the National Ethics Advisory Committee, an independent advisory body to the Minister of Health. She has a special interest in the acute hepatic porphyrias and runs an ad hoc clinic for acute porphyria patients based at Wellington hospital. Dr Towns is happy to be contacted by New Zealand doctors for advice or referrals.
Dr Brent Doolan
Dr Doolan is a dermatology clinical fellow and research doctor currently working at St. John’s Institute of Dermatology and Guy’s and St. Thomas’ Hospital NHS Trust in London, United Kingdom. After completing his biomedical science degree at The University of Queensland, he completed his medical studies at The University of Notre Dame, Sydney and his Master of Public Health from James Cook University, with a particular interest in improving access to regional health care.
He has worked extensively in clinical and research-based dermatology, having published more than 30 international, peer-reviewed papers and speaking at both national and international conferences. He has been involved in both international clinical trials for patients with acute intermittent porphyria and Australian domestic trials for patients with erythropoietic protoporphyria through The Royal Melbourne Hospital. His interests in London currently lie in understanding and improving treatment for adult and paediatric patients with genetic skin diseases.