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National Organisation for FASD Australia

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Welcome to the website of the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD) Australia.


This landmark conference held on Friday 13th and Saturday 14th May 2022 attracted just over 200 registrations. Over 100 delegates actively participated during the ‘live’ presentations by our expert speakers with the remaining delegates taking advantage of being able to watch recordings of the conference sessions at a time that suits their own commitments. Over the coming months NOFASD will be sharing more detailed information from a selection of the conference sessions, but in the meantime, here is just a very small taste of some of the key information shared during a selection of the conference sessions.

Professor Kenneth Lyons Jones – Conference Keynote Speaker

Our keynote speaker, Professor Kenneth Lyons Jones, shared his reflections following his identification of FASD in research almost 50 years ago. He spoke passionately about the need to reduce the stigma of FASD and how reducing stigma will assist in improving the lives of those living with FASD by ensuring earlier identification and the implementation of more appropriate supports and interventions.

He identified the period of time between conception and confirmation of pregnancy as a key issue for FASD prevention and noted that it was likely that a focus on early pregnancy awareness will be most effective in terms of preventing FASD. He offered some genuine hope for improvement in this respect through current research which is focused on reducing the time following conception that it takes for a woman to be able to identify that she has fallen pregnant.

When a woman wears an “Oura” ring it takes her temperature once each minute over every 24 hours.  Preliminary research data from 30 pregnancies shows a unique pattern of temperature increase around the time of conception. This enabled identification of pregnancy only five and a half days after conception – significantly reducing the timespan between conception and awareness of pregnancy. Another very exciting area of current research relates to the “Zinc Spark” – billions of zinc atoms are released at the exact moment that a human egg is penetrated by a human sperm cell, resulting in a ‘zinc spark’. More research will be undertaken as to how this discovery will be translated into a method that can be used outside a laboratory situation in order to confirm conception. Finally, in addition, in the USA there are now bars in some areas that have pregnancy test kits available in vending machines, so that a woman can test to see if she is pregnant before ordering a drink.

Dr Christie Petrenko’s presentation about navigating transitions for those with FASD provoked a lot of excitement and interest in the ‘My Health Coach’ app being released in Australia in the future. Developed in partnership with the Adult Leadership Committee of FASD Changemakers in North America, the app promises to be a very useful tool for those living with FASD. Based on the ‘Self Determination Theory for Wellness’ the app is designed to meet three key features – autonomy, competence and relatedness and promote motivation, engagement and determination. The planned outcomes of using the app are an increase in physical health and quality of life. The focus on providing this tool as an app is to make sure that it is as accessible as possible to people with FASD.

The Three-Minute Thesis session saw 10 researchers provide an engaging summary of their research within the concise time frame of just 3 minutes! Research featured ranged from that which focussed on prevention of FASD, to research on educational supports and outcomes, impacts on the whole family and also the compelling issues of suicidality and engagement with the criminal justice system. The Three-Minute Thesis Prize was awarded to Emma Doherty who presented on the topic How can we improve antenatal care addressing alcohol consumption during pregnancy in public maternity services? research undertaken in conjunction with her colleagues in the NSW Department of Health. Judged by a panel of people with lived experience of FASD, the People’s Choice Award, was presented to Natalie Phillips for her presentation on the research she is doing with colleagues on the topic of Caring for children with FASD: importance of understanding the whole family’s needs.

In the closing session of the conference NOFASD was delighted to present three very special awards.

The Lifetime Achievement Award was awarded to Lola Miers who, in conjunction with her family has made a lifetime contribution to knowledge, awareness and understanding of FASD. There were people known to have FASD, but in terms of understanding the needs of people with FASD Lola Miers is the “Australian Patient Zero” after being diagnosed with FASD nearly 25 years ago. Lola has worked with her family and health professionals to better understand this disability. She has willingly shared her thoughts and experiences on her journey and allowed her often challenging circumstances to provide insight for others who must better understand FASD to effectively improve outcomes everyone. Lola is a wonderful example of strength and resilience and NOFASD commended her for her generous spirit, open and loving heart and determination to be a powerful advocate for herself and others affected by FASD.

Two presentations were made of the newly created NOFASD Australia Leadership Award.

The first recipient of this award was Professor Elizabeth Elliott for her dedicated contribution to diagnosis, understanding and prevention of FASD. For over 20 years she has been involved in clinical care, research, advocacy and policy development on FASD and alcohol use in pregnancy. Her career is dedicated to advancing human rights, health and quality of life for ill and disadvantaged children. She has been active in community-driven research, supported not-for-profit organisations and participated in forums of every kind. Professor Elliott will always willingly and generously lend her time and expertise on the subject of FASD – and the FASD community is very grateful.

The second award was presented to Nicole Hewlett. An Aboriginal woman with a Bachelor of Psychological Science (Honours), and a Master’s degree in Public Health, Nicole has a passion for genuine knowledge translation research that is strengths-based, healing-informed, and trauma aware, and that benefits local communities. Nicole has translated her passions into actions and offered her time, expertise, professionalism and glorious sense of humour to the world of FASD-related activities.  Always willing to listen, learn and educate, Nicole brings warmth and enthusiasm to all her work. The future FASD landscape in Australia will benefit from leaders like Nicole.

The FASD Forum ’22 was presented by NOFASD Australia with the support of Presenting Partner Australian Government Department of Health.

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