We have amazing support!
NOFASD Australia is proud to have the support of so many Australians who are making an impact in their communities. The growth of FASD as a recognised disorder, diagnostic processes and continued search for best practice interventions has been rapid across international borders – with Australian Ambassadors playing key roles throughout this time! We’re grateful that these experts so willingly share what they know about this disability and living life well after diagnosis. NOFASD has drawn on the expertise of our Ambassadors in developing the wide range of resources that are available on our website and which we also share through providing workshops and training sessions Australia-wide.
A FASD diagnosis can be daunting, but it’s also an opportunity to start making changes that can improve the rest of your child’s life. With the right support and intervention, children with FASD can lead happy, healthy and successful lives.
If you’re a parent or carer living with FASD, we know it can be tough. You’re not alone – we’re here to help! NOFASD Australia is the national voice for those impacted by FASD, and we’re committed to making sure that everyone has access to the support they need. We offer a range of services and programs designed to help families living with FASD, and we’re always here to lend a listening ear.
Get in touch with us today to find out more about what we can do for you!
Meet our Australian Ambassadors, we feel so lucky.
Sue Miers AM
Founder – NOFASD Australia
Sue is the founder and past Chair of the Board of the National Organisation for Fetal Alcohol Spectrum Disorders Australia (NOFASD Australia). NOFASD Australia was founded in 1999 as The National Organisation for Fetal Alcohol Syndrome & Related Disorders (NOFASARD). She has been caring and supporting her now adult foster daughter who has partial fetal alcohol syndrome (pFAS) for the past 34 years. Sue became acutely aware of FASD as she has advocated and supported her daughter through the challenges of FASD across the lifespan.
During her time on the Board of NOFASD Sue lobbied extensively on both a state and national level to raise awareness about Fetal Alcohol Spectrum Disorders (FASD) and was an invited member of, and reported to, various national and state government agencies in Australia, as a recognised parent authority in this area.
In this voluntary role Sue also provided one-on-one support to many parents /carers and individuals living with FASD and also delivered FASD presentations/workshops to foster carers, teachers, drug and alcohol workers, disability workers, mental health workers, midwives and many other community organisations throughout Australia. She has significant expertise and knowledge around the secondary conditions which develop for people affected by FASD.
In June 2006 Sue was awarded the Member of the General Division of the Order of Australia for service to the community through the establishment of the National Organisation for Fetal Alcohol Spectrum Disorder, Community Education and Reconciliation. She has been widely acknowledged as a significant contributor to knowledge and awareness of FASD in Australia. This has encouraged the development of clinical expertise and recognition at a national level that Australia requires a serious commitment to the prevention, diagnosis and development of effective interventions for FASD.
Sue retired from NOFASD Australia in an official capacity in 2015 but continues to provide voluntary support to the organisation in various roles. In addition Sue’s practice based wisdom as the Parent & Family Support Co-ordinator ensures that NOFASD is able to develop staff, support clients and upskill those working to enhance the lives of individuals and families affected by FASD.
Dr Jeff McMullen
Journalist, author and film-maker
Journalist, author and film-maker for over fifty years, Dr Jeff McMullen AM has been a foreign correspondent for Australian Broadcasting Corporation, a reporter for Four Corners and Sixty Minutes, anchor of the 33-part issue series on ABC Television, Difference of Opinion and host of forums on National Indigenous Television.
Recent documentaries have focussed on the human rights of Australia’s First Peoples, the impact of the Northern Territory Intervention on Aboriginal wellbeing and the pattern of chronic illness taking many lives.
Articles and speeches on the global pattern of chronic illness, Fetal Alcohol Spectrum Disorder, malnutrition and other conditions of poverty impacting maternal and infant health, the links between low birth-weight and renal illness, education as a preventative health measure and new approaches to wellness can be found at www.jeffmcmullen.com.au
As a foundational director of Australian Indigenous Mentoring Experience (AIME) Jeff McMullen has worked closely with Jack Manning Bancroft and other Indigenous educators in growing the most successful Australian mentoring program for more than 10,000 Indigenous students with 93% of them completing Year 12 and 34% entering tertiary education. AIME has seeded this Aboriginal education initiative in South Africa, Uganda and Canada.
McMullen is also a director of the Engineering Aid Australia Indigenous Summer School program, building a growing number of Indigenous engineers. For fourteen years McMullen served as Honorary CEO of Ian Thorpe’s Fountain for Youth, establishing early learning support for young mothers and the Literacy Backpack program in 22 remote communities. He was a foundational Trustee of the Jimmy Little Foundation, focussed on improving Aboriginal access to dialysis and promoting healthier nutrition.
Over the past two decades, McMullen has chaired forums for the Australian Indigenous Doctors Association (AIDA), NACCHO and Aboriginal health organisations in NSW, Queensland, Western Australia and Victoria, as well as the Northern Territory’s first conference focussed on Indigenous suicide prevention. He worked closely with the Sunrise Health Service Aboriginal Corporation in the Katherine region, developing maternal and infant health programs.
A long-term patron of the Merry Maker’s Down’s Syndrome troupe and Mirabel, the foundation working to support the extended families caring for children who have died from drug overdose, McMullen also contributed to the University of Canberra’s Healthpact Center, promoting health and social equality for all Australian children.
In 2006 McMullen was awarded an Order of Australia (AM), for service to journalism and efforts to raise awareness of economic, social and human rights issues in Australia and overseas, as well as service to charity.
In “Dispossession: Neo-Liberalism and the Struggle for Aboriginal Land and Rights in the 21st Century” (IN BLACK & WHITE published by Connor Court 2013) Jeff McMullen analyses the ideology and market forces shaping Indigenous policy and impacting efforts to create wellbeing.
McMullen’s film, East Coast Encounter, is now travelling Australia as part of an exhibition by leading artists, poets and historians who explore Aboriginal perspectives on James Cook’s 1770 contact with Aboriginal people and the resulting history.
“A LIFE OF EXTREMES – JOURNEYS AND ENCOUNTERS” (HarperCollins Australia 2001) examines the global pattern of conflict, environmental degradation and species extinction, as well as sharing ideas from some of the world’s bravest individuals on a brighter future for the human family.
“INTERVENTION: An Anthology” (Concerned Australians 2015) edited by Rosie Scott and Anita Heiss includes Jeff McMullen’s essay, “Rolling Thunder – Voices Against Oppression” which argues that crushing Aboriginal control over community life has more than doubled the damage to child well-being, and contributed to escalation of illness, suicide and incarceration.
Dr Jeff McMullen AM’s “VINCENT LINGIARI MEMORIAL LECTURE of 2015.” at Charles Darwin University contends that recognition of Aboriginal sovereignty is key to improving Indigenous wellbeing.
Professor Carmela Pestell
Associate Professor
Associate Professor Carmela Pestell is a Clinical Psychologist and Neuropsychologist with over 25 years’ experience working with children and adults with neurodevelopmental disorders, neurological conditions and acquired brain injury. She has also worked in private practice for many years assessing children and young adults with FASD, particularly within the justice system. More recently this has included working for ‘PATCHES Paediatrics’ participating in multi-disciplinary child assessment clinics in remote North West locations, as well as metropolitan justice and child protection services.
Carmela is a Member of the Australian Psychological Society, including Full Membership of the College of Clinical Neuropsychologists (being the inaugural WA chairperson between 2007 and 2010). She is based at the University of WA (School of Psychology) and is an Honorary Research Associate with the Telethon Kids Institute (FASD Research Group), a member of the Australian National FASD Network and had input into the new Australian FASD Diagnostic Guidelines.
Dr Pestell was the Director of the state-wide Neurosciences Unit (WA Health Department) for over 14 years, and was involved in setting up their paediatric programme. Since 2013 Dr Pestell has had a position at UWA as the Director of the Robin Winkler Clinic (RWC) which includes coordinating clinical services at RWC, as well as a postgraduate neuropsychology and clinical psychology training clinic, supervising interventions and collaborating with the PATCHES Paediatric team who provide multidisciplinary child development (FASD and Autism) clinics at RWC.
Carmela is also actively involved in clinical post-graduate supervision, teaching and research in areas that include brain injury, concussion, ADHD and FASD. She has a record of successful research collaboration, as evidenced by numerous co-authored publications and research funding (over $5 million to date). Additionally, Carmela understands firsthand the challenges families face when they have a child with a disability, as she has a younger brother with a severe intellectual disability.
Dr Doug Shelton
Director for Children’s & Women’s Health
Doug is a paediatrician who qualified in 1994 and who has sub-specialised in community paediatrics and child development. He is the Medical Director for Children’s & Women’s Health, Gold Coast Health (2000-2013), comprising Community Child Health providing community based child health nursing, school health and child development services; the Paediatric Unit, Gold Coast University Hospital providing acute inpatient and outpatient services; and Women’s Health Services, providing birthing, inpatient and outpatient services.
Doug’s special interest areas are Fetal Alcohol Spectrum Disorder (FASD) for which he achieved a Churchill Fellowship 2013-14 to investigate how to build a comprehensive assessment and intervention service for children with Fetal Alcohol Spectrum Disorder; Indigenous child health; child development and learning problems; obesity; and leadership versus management and how to do both better.
Doug is a current member on the Expert Panel on Childhood Obesity and Food Taxation, Griffith University, 2013; the Child Development Sub-Network, Queensland Health (2000-2013) and chaired this network from 2008-2010. He is a member of the Queensland State Committee, Royal Australasian College of Physicians (Deputy chair, 2007 – 2008 and Chair 2009 – 2010). He is on the Specialist Advisory Committee, Community Child Health (Oversight of paediatric trainees) as a Member (2003- 2008) and Chair (2006 – 2008); involved in curriculum development for paediatric training in community child health, RACP (Chair, curriculum writing committee, 2003-2007); a member of the child development special interest group (Deputy chair 2003 – 2006 and Chair 2007 – 2008) and served as a member of the Chapter of Community Child Health from 1996 – 2013.
Doug’s publications and presentations on FASD and related issues include “The Science & Evidence for Early Intervention in Child Development, 2012, General Practice Gold Coast Scientific Meeting; FASD Awareness Day Panel Discussion, 2012, University of Queensland, Royal Brisbane & Womens Hospital, 2012; FASD Intervention Strategies, University of Queensland, Royal Brisbane & Women’s Hospital, 2012; FASD in Queensland, Gold Coast Infant Mental Health Conference, 2012; Dean L Biron, Doug Shelton (2007) Functional time limit and onset of symptoms in infant abusive head trauma. Journal of Paediatrics and Child Health 43 (1-2), 60–65; C Wright, D Shelton, M Wright. A contemporary review of the assessment, diagnosis and treatment of ADHD. Australian Journal of Learning Difficulties 14 (2), 199-214; and Reid, N., Dawe, S., Shelton, D., Harnett, P., Warner, J., Armstrong, E., LeGros, K., & O’Callaghan, F. (2015) Systematic review of fetal alcohol spectrum disorder interventions across the lifespan. Alcoholism: Clinical and Experimental Research (Accepted for publication).
Doug received an Out-Standing Child Abuse Research Award (OSCAR), 23rd Annual San Diego International Conference on Child and Family Maltreatment, January 2008.
Dr Heidi Webster
MBBS, FRACP, MPH (Masters Public Health)
Dr Heidi Webster is a consultant paediatrician specialising in developmental and behavioural disorders. She is the Clinical Services Director at the Sunshine Coast Child Development Service (CDS) in Maroochydore, QLD and set up the Sunshine Coast FASD Clinic within the CDS in 2015. During her Paediatric training, Heidi experienced working in rural Indigenous communities, including Woorabinda (Central QLD) and Mornington Island, and was involved in a Community Child Health Nurse Home-visiting program designed to support disadvantaged families with infants in Brisbane. In combination with the Chermside Indigenous Health Service, she and a maternal child health nurse piloted the home-visiting program to provide support for urban indigenous families with infants and young children in North Brisbane, to promote positive early childhood developmental outcomes for indigenous children. Her research has involved analysis of the effectiveness of nurse home-visiting to improve the quality of urban indigenous children’s early environments, and a systematic literature review of nurse home-visiting for disadvantaged infants and their families around the world.
Heidi also works in a private Paediatric practice on the Sunshine Coast, focussing on diagnosis and management of childhood autism spectrum disorders and the many childhood learning, behaviour and mental health conditions seen in Community Paediatric practice. Heidi enjoys interfacing with education professionals in a number of models of practice involving case-conferencing and/ or school visits, in order to best understand children’s predicaments and provide holistic care within their various environments.
Heidi is passionate about improving child development services using a child-centred focus which takes into account the influence of family and broader environments, and in particular, early identification of childhood developmental disorders, enabling accessing of meaningful early intervention, parental understanding and capacity building, and maximising children’s potential and quality of life in all their environments. Her interest in FASD started when she trained with Dr Doug Shelton’s FASD clinic team on the Gold Coast in 2014, and then set up the Sunshine Coast FASD diagnostic clinic in 2015 for children aged 0-12 years, and trained the allied health team within Sunshine Coast CDS in FASD diagnosis. She is a member of the Australian FASD Clinical Network, and assisted in forming a research and clinical consortium between Sunshine Coast and Gold Coast Child Development Services, and Griffith and Sunshine Coast Universities to expand Queensland’s clinical FASD diagnostic services and enable Sunshine Coast CDS to engage in research into the impact of FASD on children and families. Heidi has been a public speaker for FASD in numerous community and health service education sessions, and is committed to enhancing awareness of the risks and effects of drinking in pregnancy, and FASD in the wider community, as well as within health, education, child protection, disability and community services.
Heidi is the Vice President of the Neurodevelopmental Behavioural Paediatric Society of Australasia, a group of specialist Paediatricians and other doctors dedicated to best practice care, research and education around neurodevelopmental and behavioural conditions in children. She is passionate about improving the childhood and long-term life course outcomes for children with developmental disorders, and those from at risk groups, including children in out of home care, and Aboriginal and Torres Straight Islander children.
Hon Wayne Martin AC QC
Former Chief Justice of WA
The Honourable Wayne Martin was admitted to legal practice in Western Australia in 1977. In 1984 he became Senior Litigation Partner with Keall Brinsden in Perth and then in 1988 joined the Independent Bar. In 1993 he was appointed Queen’s Counsel. Between October 1996 and October 2002 he was a Member of the Law Reform Commission, and from 1997 to 2001 served as its Chairman. From 2001 – 2003, he took on the role of counsel assisting the HIH Royal Commission in Sydney. In 2006, he became the 13th Chief Justice of the Supreme Court of Western Australia. In 2012, he was appointed a Companion in the General Division of the Order of Australia “for eminent service to the judiciary and to the law, particularly as Chief Justice of the Supreme Court of Western Australia, to legal reform and education, and to the community”. He has held many positions as Chairman or Patron, and is also the Lieutenant Governor of Western Australia. He was appointed inaugural Chair of the Judicial Council on Cultural Diversity in 2013 and served in that capacity until 2017. He retired from the office of Chief Justice in July 2018.
Dr Kerryn Bagley
Clinical Social Worker, FASD consultant
Dr Kerryn Bagley is an accredited clinical social worker who specialises in support for children and young people with FASD, and FASD education and training for professionals. Kerryn first became aware of FASD while working in primary mental health care as a child and adolescent counsellor, when a birth mother of a child thought to be affected by FASD bought the condition to her attention. With a background working in traumatic brain injury, alongside her experience in child development, trauma and mental health, Kerryn began to investigate the condition further, but found that little information or resources were available in New Zealand or Australia for professionals who encountered clients with pre-natal alcohol exposure. This prompted her to undertake her doctoral research (University of Otago, New Zealand) investigated the ways in which health, allied health and social services in New Zealand respond to FASD, and proposed strategies to enhance understanding of FASD across these sectors.
Kerryn has undertaken further training in the USA and Canada with organisations that specialise in FASD training and care, including intervention training with FASCETS USA and diagnostic training at The Asante Centre, Canada. In 2015 She was awarded a Creswick Fellowship to undertake further training in the Families Moving Forward Program, an evidence-based FASD intervention program at the Seattle Children’s Research Institute.
Kerryn now maintains a private practice as a trainer and counsellor in association with the Better Life Centre (Brisbane), where she has facilitated the development of Australia’s first independent, interdisciplinary diagnostic clinic for FASD. She is active as a public presenter and commentator on FASD in forums that range from academic conferences through to ABC television, and maintains links to a range of community organisations. She is also the inaugural co-chair (with Dr James Fitzpatrick) of the Australian FASD Clinical Network.
Dr Marcel Zimmet
MBBS BA(Hons) FRACP
Dr Marcel Zimmet is a developmental paediatrician. He works at the at the Sydney Children’s Hospital Network (Westmead) in the Fetal Alcohol Spectrum Disorder (FASD) Service, which is part of the ‘The CICADA’ (Care and Intervention for Children and Adolescents affected by Drugs and Alcohol) Centre NSW. The Centre is unique both in Australia and internationally in its life course approach to addressing alcohol and drug issues from birth to adolescence. Marcel also works at Royal Far West in Manly, a developmental assessment and therapy service for children from rural and remote areas.
Marcel is a member of the Expert Panel for the Australian FASD Diagnostic Instrument and an author of national diagnostic guidelines and online training modules.
Marcel is the principal investigator for national FASD case surveillance through the Australian Paediatric Surveillance Unit (APSU) and is an investigator for research into the impact of FASD on children and families.
In 2016, Marcel was awarded a Fulbright Professional Scholarship to study FASD in the USA. Marcel’s learning from pioneers and experts in the field has enriched his work in clinical service provision, education, research, public health, policy and advocacy.
Marcel is passionate about and committed to improving understanding about the preventable nature of FASD as a developmental disability and the benefits of not drinking in pregnancy for children’s neurodevelopment, within the health professions and wider community.
Dr Sharman Stone
Federal Member for Murray
The Hon Dr Sharman Stone has been the Federal Member for Murray since 1996.
In 2011 Dr Sharman Stone successfully gained bipartisan support for her motion on FAS/FASD in the House of Representatives.
Dr Stone established the National Inquiry into FAS/FASD as a member of the House of Representatives Standing Committee on Social Policy and Legal Affairs. This evolved into the National strategy.
As the chair of the House of Representatives Indigenous Affairs committee she recently tabled a report on the impacts of alcohol on indigenous communities, in particular its FAS/FASD impact.
Dr Stone was instrumental in establishing the bi-partisan parliamentary group – Parliamentarians for the Prevention of FASD and is Co-Chair of the group.
She is currently a member of five parliamentary committees. She is Chair of the Indigenous Affairs Committee and Chair of the Foreign Affairs and Aid Sub-committee.
In the Howard Government Dr Stone held a number of portfolio positions including Minister for Workforce Participation, Parliamentary Secretary to the Minister for Finance and Administration and Parliamentary secretary to the Minister for the Environment and Heritage. She has also held Shadow portfolios for Immigration and Citizenship, Early Childhood Education and Childcare and the Status of Women
Dr Stone holds a Bachelor of Arts (Honours) in Anthropology from Monash University, a Master of Arts in Sociology from La Trobe University, a Graduate Diploma in Tertiary Education and a Doctor of Philosophy (Ph.D.) degree in Economics and Business from Monash University.
Dr Stone has authored or co-written a number of books, including Aborigines in White Australia: A Documentary History of the Attitudes Affecting Official Policy and the Australian Aborigines 1697-1973 and published journal articles and papers on environmental and rural issues, water law and conservation.
Professor Karen Moritz
Director, Child Health Research Centre
Professor Moritz is internationally renowned for her work in understanding how early life perturbations contribute to an increased risk of developing cardiovascular, renal and metabolic disease in adulthood. She graduated from the University of Melbourne in 1998 with a Bachelor of Science (Hons), majoring in Fetal Physiology. She then completed a PhD in Physiology at the University of Melbourne in 2001. Over the last 5-7 years her research has focused on determining how prenatal alcohol can result in “developmental programming” of disease. Her research has identified critical windows of susceptibility to alcohol including the period prior to implantation.
Professor Moritz currently leads a research team containing Postdoctoral Fellows and Research Assistants as well as numerous PhD and Honours students.
Ms June Oscar AO
Aboriginal and Torres Strait Islander Social Justice Commissioner
June Oscar is the Aboriginal and Torres Strait Islander Social Justice Commissioner, a proud Bunuba language speaker and is considered one of the most outstanding Aboriginal leaders in the Fitzroy Valley, and across Australia. She is a strong advocate and activist for Indigenous Australian languages, social justice, women’s issues, and FASD. Her courage and determination to address the most complex and sensitive issues affecting the lives of Aboriginal Australians is inspirational. She does this with little regard for the immense personal toll that such actions necessitate.
Her focus on Aboriginal children, and her determination that we do not sacrifice the health of our children for the so-called ‘right’ to buy full strength take-away alcohol, makes her a role model for all Australia. In 2011, in an article appearing in The Age and Sydney Morning Herald (Weekend Magazines), June was named as one of the 50 most influential women in the world for her work in improving the lives of those living in remote Aboriginal communities. June has previously held the positions of Deputy Director of the Kimberley Land Council and the first woman to chair the Marra Worra Worra Resource Agency (Fitzroy Crossing).
She is a Director on the Boards of Bunuba Films Pty Ltd and Bunuba Pty Ltd. She is the former chair of the Kimberley Language Resource Centre and the Kimberley Interpreting Service. In 1990 June was an appointment of the Federal Government to the Aboriginal and Torres Strait Islander Commission. She has a Bachelor’s Degree in Business from the University of Notre Dame, Broome, Western Australia, and is currently writing her PHD.
June is a co-founder of the Yiramalay Wesley Studio School and is a Community member of the Fitzroy Valley Futures Governing Committee. In 2012 June was appointed as an Ambassador for Children and Young People by the Western Australian Commissioner for Children and Young People, Michelle Scott. June is a Chief Investigator on the Lililwan Project. In June of 2013 June was awarded an Order of Australia. June was the winner of the Westpac and Financial Review 100 Women of Influence 2013 for Social Enterprise and Not for Profit Category. In 2014 June was awarded the Menzies School of Health Research Medallion for her work with Foetal Alcohol Spectrum Disorder.
Nick Rushworth
Executive Officer of Brain Injury Australia
Nick Rushworth has been Executive Officer of Brain Injury Australia since 2008. He was also President of the Brain Injury Association of New South Wales between 2004 and 2008. In 1996, Nick sustained a severe traumatic brain injury as a result of a bicycle accident. Before joining Brain Injury Australia in 2008, Nick worked for the Northern Territory Government setting up their new Office of Disability. Formerly a producer with the Nine Television Network’s “Sunday” program and ABC Radio National, Nick’s journalism has won a number of awards, including a Silver World Medal at the New York Festival, a National Press Club and TV Week Logie Award.
Nick serves as a patient representative on: the Australian Trauma Quality Improvement Program Steering Committee; the Victorian Neurotrauma Advisory Council; the Neurotrauma Evidence Translation Steering Committee of the National Trauma Research Institute; the Executive of the Brain Injury Rehabilitation Directorate of New South Wales Health; the Victorian Transport Accident Commission/ Institute for Safety, Compensation and Recovery Research Behaviours of Concern Working Group; Vocational Intervention Program Steering Committee of New South Wales Health; the Disability Advisory Committee of the Australian Electoral Commission; the Department of Social Services’ Disability Employment Services Consumer Advisory Group and Telstra’s Disability Forum. Nick is also a Director of the Australian Federation of Disability Organisations.
Professor Carol Bower
Retired Epidemiologist
Professor Carol Bower is a retired Epidemiologist, and was the Senior Principal Research Fellow, Telethon Kids Institute, Perth WA, Professor, Centre for Child Health Research, The University of Western Australia and Medical Specialist and Head, WA Register of Developmental Anomalies
Carol is highly regarded nationally and internationally for her leadership in birth defects research, providing population-based evidence for prevention, diagnosis, management and development of policy and practice. She has academic qualifications in medicine, epidemiology and public health and is a passionate advocate for the primary prevention of birth defects, for monitoring and evaluation of preventive, screening and treatment interventions and for the involvement of consumers and community in research.
In 1980, Carol established and, until 2016, maintained the internationally recognised Western Australian Register of Developmental Anomalies. She has also contributed to the establishment, maintenance and expansion of internationally unique, linked databases of maternal and child health, intellectual disability and autism. Her research has a strong focus on investigating causes and effects of birth defects, on translating research findings into public health policy and practice and on evaluating the effectiveness of that translation. Leading examples are her research and advocacy on the prevention of neural tube defects such as spina bifida (promoting folic acid supplement use and mandatory fortification of flour with folic acid) and research on prevention, diagnosis and management of Fetal Alcohol Spectrum Disorders. She has served in an executive capacity for six years for the International Clearinghouse for Birth Defects Surveillance and Research, the peak international body for birth defects research. Carol was awarded the International Flour Fortification Initiative Leadership Award in 2007 for her work on folate and neural tube defects and Life Membership of the Australasian Epidemiological Association, in recognition of her significant contribution to epidemiology. She has a strong commitment to consumer and community engagement in research and its translation. Consumer reference groups guide her research and she mentors and supports students and staff in inclusion of consumers in research projects. In 2006, Carol received a Health Consumers’ Council (WA) Inc. Certificate for Excellent Services to Consumers and, in 2012, the Program Grant on which she was a Chief Investigator was awarded a Consumer and Community participation Award in recognition of good practice initiatives.
Carol received the Sue Miers Lifetime Achievement Award 2020 at the FASD Research Australia Centre of Research Excellence Virtual Celebration and Awards.
Professor Steve Allsop
Professor and Director of the NDRI
Professor Steve Allsop has been involved in alcohol and drug policy, prevention and treatment research and practice, professional development and service management for more than 30 years, working in government and academic positions. He is Professor of the National Drug Research Institute (NDRI) at Curtin University and Director of the World Health Organization Collaborating Centre for the Prevention of Alcohol and Drug Abuse. Professor Allsop is the current Deputy Chair, Australian National Advisory Council on Alcohol and Drugs; a Member, Child Death and Domestic Violence Advisory Panel, Ombudsman (WA); and Deputy Regional Editor for the international journal Addiction. He was a Member of the National Health and Medical Research Council (NHMRC) working party on the Australian Guidelines for low risk drinking and until recently was Deputy Chair, Board of the Drug and Alcohol Office (WA). He has engaged in research examining the impact of parental alcohol and drug use on fetal and child development, led a national project reviewing the impact of alcohol container warning labels about drinking during pregnancy and was one of the leads on a national project to develop resources to facilitate the prevention of FASD among Aboriginal and Torres Strait Islander communities.
Professor Heather Douglas
Professor of Law
Heather is a Professor of Law at the Melbourne Law School, The University of Melbourne. She researches in the areas of criminal justice and domestic violence and has published regularly on FASD. In particular her work has focused on sentencing and FASD and the education of judicial officers and legal practitioners about the relationship between FASD and criminal justice.
Heather has also researched the relationship between Indigenous people and criminal law and her book Indigenous Crime and Settler Law: White Sovereignty After Empire (written with Mark Finnane)) (Palgrave, 2012). In 2014 she was awarded an Australian Research Council Future Fellowship to research the way in which women who have experienced domestic violence use the legal system to help them leave violence. This research resulted in her book, Women, Intimate Partner Violence and the Law (OUP, 2021). She has been part-time commissioner with the Queensland Law Reform Commission where she worked on a number of references and has worked as a criminal lawyer in Melbourne and Alice Springs.
Professor John Boulton
Emeritus Professor of Paediatrics
John is an academic paediatrician, now retired from clinical practice. His undergraduate medical education was at Edinburgh University followed by post-grad training in the children’s hospitals of Perth, Melbourne, and Adelaide. He was appointed Foundation Professor at the University of Newcastle in 1980. His professional interests include growth and nutrition in childhood, population child health and the amelioration of the effects of social disadvantage on children’s health and wellbeing (Community Child Health). He holds an honorary professorial appointment within the Centre for Values, Ethics and Law at the University of Sydney with respect to his work in Medical Humanities; an adjunct professorial affiliation at the University of Notre Dame in Broome, WA, with respect to his collaborative work at the Nulungu Centre for Indigenous Research; and a professorial fellowship at the Telethon Kids Institute at UWA, Perth, WA, with respect to his role in Aboriginal child health research in the Kimberley. In 2011 he was awarded the Howard Williams Medal for his career contribution to Paediatrics by the Division of Paediatrics of the Royal Australasian College of Physicians. In 2015 Rural Health West awarded him the prize for his “Outstanding contribution to regional and remote health services in Western Australia”.
Dr James Fitzpatrick
Consultant Paediatrician & Researcher
James Fitzpatrick is a consultant paediatrician, researcher and entrepreneur. He established PATCHES Paediatrics to harness the creativity of social enterprise and the precision of science to address seemingly intractable health problems in Aboriginal communities. James was awarded Young Australian of the Year in 2001 for his work in Aboriginal health, rural health workforce improvement and youth suicide prevention. Having completed his PhD through the University of Sydney, and as a former Infantry soldier, James combines a scientific approach with a reputation for getting things done.
He recently led a federally funded project aimed at improving the lives of children living in remote Indigenous communities in the WA Kimberley, in partnership with local community organisations and national research institutes. The work involved estimating for the first time in Australia the prevalence of fetal alcohol spectrum disorder (FASD) in the 40 remote communities of the Fitzroy Valley. Having documented the prevalence of FASD, James is now working with health and education partners to develop a child health clinic run in schools to help young people to reach their educational potential.
In partnership with Aboriginal leaders in the Fitzroy Valley, he leads a community-based FASD prevention strategy. This strategy has seen rates of drinking in pregnancy reduce from 60% in 2009 to <20% in 2015. The bold goal of this strategy is to ‘Make FASD History’ and reduce rates of drinking in pregnancy to below 10% by 2018.
James is the founder of True Blue Dreaming, an Outback Youth Mentoring Program working with communities in the WA heat-belt and Kimberley regions, with a vision to expand the program throughout Western Australia and then nationally. He currently sits on the Australian National Advisory Council on Alcohol and Drugs.
James has been a rabble-rouser and activist for some time. As the chairman of the National Rural Health Students Network in 2000, James shifted the focus of this organisation of 5000 medical and allied health students to deliver community service activities to some of Australia’s most remote communities. In that year he helped to establish the Carnarvon Children’s Festival in Western Australia in response to alarming rates of youth suicide. Through the Children’s Festival members of the Indigenous and non-Indigenous communities were encouraged to come together around their most precious resource… their children.
Caterina Giorgi
Chief Executive Officer of FARE
Caterina is the CEO of the Foundation for Alcohol Research and Education. Caterina has extensive experience in leadership roles in advocacy across the not-for-profit and for purpose sectors.
Throughout her career, Caterina has focused on reducing inequity and improving health and social outcomes through strategic advocacy.
Caterina founded and led For Purpose, a national organisation working with other not-for-profit and purpose-driven organisations to build their strategic, advocacy and communications capacity to create positive social change. Caterina also worked previously at FARE, heading up the Policy and Research Team.
Caterina has presented at national and international conferences and delivered training and workshops on strategy, advocacy and public policy.
She has an Honours Degree in Public Health, was a finalist of the 2015 ACT Young Woman of the Year Awards, and is a Fellow of the Centre for Australian Progress and a Graduate of the Australian Institute of Company Directors.
Dr Janet Woollard
Barrister and Solicitor
Dr Janet Woollard was admitted as a lawyer of the Supreme Court of Western Australia in March 2014 and was an elected member of the WA Parliament from 2001 to 2013. She chaired the WA Parliamentary Legislative Assembly “Education and Health Committee” that presented a report to the WA Parliament in 2012 titled “Foetal Alcohol Spectrum Disorder: the invisible disability”. Janet is a Justice of the Peace, has a BAppSc (Nursing Education), a Masters in Education and a PhD from University of Western Australia. Janet was a registered nurse and past president of the Australian Nursing Federation (WA Branch). She was a Board Member of NOFASD from 2014-2018 and Chair of NOFASD’s board from 2016 to 2018.
Neroli Endacott
Foster Parent & Long Term NOFASD Volunteer
Neroli is a foster mother, longtime volunteer for NOFASD Australia and one of the great pioneers of FASD knowledge in Australia.
In 1991, Neroli became the coordinator of an after school care program, where she met a young five-year-old boy who decided he wanted her for his mum. The Department of Families was quick to agree to this and a ‘Foster Mother’ was born. Subsequently, Neroli became renowned for caring for over 100 disadvantaged children and for her recognition of children displaying evidence of FASD. However, initially Neroli struggled to get support from local doctors as most did not believe the evidence she accrued from her careful personal observations of the children in her care.
The lack of knowledge within the medical profession in Australia at that time inspired Neroli’s goal to raise awareness of FASD. In the beginning Neroli made phone calls to Alberta in Canada, asking for any information she could obtain in order to assist and help the children for whom she cared.
It has now been over 29 years since Neroli fostered her first child with FASD (who had been diagnosed at birth with ‘distinctive facial features’). This experience gave Neroli great motivation,strength and determination to keep fighting for appropriate support for all children affected by FASD. Neroli undertook the monumental task of educating the community via her mantra that “Drinking when pregnant is like playing Russian Roulette”. This direct approach shocked many at the time, but Neroli was persistent in following up with doctors and other allied health professionals – desperately trying to find professionals to assist her and join in this quest. In the early years, most thought Neroli was crazy considering the idea that alcohol could have a range of possible negative effects on unborn children.
In approximately 2006, Neroli met Sue Miers, the founder of NOFASD Australia, and the two quickly became great friends and colleagues – and indeed remain so to this day. Neroli became active online and created a website which featured an image of a woman saying ‘no’ to a drink. This website also provided further information about the genuine risks surrounding drinking when pregnant which can result in FASD – a lifelong disability. To intensify the impact of this message, Neroli’s website also included another image – a picture of a baby in a wine glass.
Over more recent years, Neroli has been publicly honoured by many for her care and dedication to children – especially those affected by FASD. She has received accolades from politicians at all levels – local, state and federal – and was also chosen as the local winner of her region’s Australian of the Year award in 2008.
Realising the need and the benefits that flow from early intervention, Neroli continues to to provide support to many families raising children with FASD, generously sharing her many years of knowledge and experience. She also provides credible and up-to-date evidence-based information to local doctors, in conjunction with NOFASD Australia. Neroli’s selfless generosity of spirit and dedication never falters and we are all blessed and privileged to have her continue to work towards ensuring that this serious issue is brought to the attention of Australian mothers-to-be and to medical and allied health professionals.
Neroli received the 2020 Community Award at the FASD Research Australia Centre of Research Excellence Virtual Celebration and Awards.
Dr Robyn Williams
Senior Research Fellow & FASD Educator
Dr Robyn Williams is a Noongar woman employed as a Senior Research Fellow at the Curtin Medical School, Faculty of Health Sciences in Perth, Western Australia. Robyn has a diverse background spanning over 25 years, including Aboriginal community-based agencies, government (policy) and academia (teaching and research). Over the past decade, Robyn has shown an unwavering commitment to promoting awareness of FASD and delivers community-based training focused on Fetal Alcohol Spectrum Disorder (FASD) as a disability. This training includes the need to develop infrastructure for assessment, diagnosis and interventions for children, youth and adults living with this disability, their families and caregivers.
Robyn completed her PhD in 2018 in Perth and the South-West Region of WA. Her mixed methods doctoral research focused on understanding FASD from an Aboriginal lens and is considered one of the largest consultations with Aboriginal people globally on FASD. Engagement included 180 Aboriginal participants from Noongar country and interviews with six families. The findings focused on best practice in interventions, cultural security, caregiver needs and supporting children with FASD. In 2019, this study received a Chancellor’s commendation for excellence. In 2018, Robyn was awarded the Western Australian NAIDOC Indigenous Scholar of the year. Her other qualifications include a Master of Arts, and BA in Sociology/Anthropology.
Since 2014, Robyn has worked in collaboration with the Canada FASD Research Network and outcomes include the recent publication Decolonising Justice for Aboriginal Youth with FASD (2020), with an international team led by Professor Harry Blagg. Working in collaboration with Professor Dorothy Badry (University of Calgary) and key agencies, Robyn is committed to the establishment of interventions for individuals with FASD across the lifespan, with a particular focus on the over-representation of children with FASD in child protection and criminal justice systems in Australia. Robyn has been an invited speaker on FASD at state, national and international events and webinars over the past decade.
Robyn has been the Chairperson of FASD Collaborations in Perth for the past 5 years, working in partnership with Developmental Paediatricians Dr Raewyn Mutch and Dr Amanda Wilkins. Outcomes from FASD Collaborations have included delivering FASD training and resources for the Education Department and working with the local Aboriginal Medical Services. As a trainer in FASD, Robyn has engaged and delivered FASD training to key government agencies (child protection, education, health and justice) and community-based Aboriginal agencies in Australia. Robyn remains committed to undertaking research that has tangible outcomes for the community, including capacity building and two-way learning. This background has provided Robyn with a strong grounding in undertaking research that has practical and immediate benefits within the overall community.
