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MEDIA RELEASE                   

EMBARGOED: 12:01AM AEST, TUESDAY, MAY 20, 2025​

NTL media release

QLD media release

SA media release

WA media release

Newcastle media release

Wollongong media release

Sunshine Coast media release

Gold Coast media release

​​Lisa Curry AO to lead national call for 4,000+ adult volunteers
for world’s largest genetics study on eating disorders

Decoding the genetics of eating disorders to identify risk & transform treatment

Triple Olympian Lisa Curry AO is fronting a national appeal today for 4,000+ adults with lived experience of an eating disorder to join the world’s largest genetics investigation into the risk factors driving these complex illnesses.1

 

The Eating Disorders Genetics Initiative 2 (EDGI2) aims to pinpoint the hundreds of genes influencing
a person’s risk of developing anorexia nervosa, bulimia nervosa, binge-eating disorder and Avoidant Restrictive Food Intake Disorder (ARFID), to improve treatment, and save lives. 

 

Ms Curry’s appeal for EDGI2 volunteers, in partnership with researchers, doctors and patients Australia-wide today, coincides with an article just published in MJA Insight+, revealing how the complex interplay of genetic, environmental and psychological factors in eating disorders,2 has hindered effective treatment breakthroughs.3

The Aussie sporting legend, mother-of-three, and champion for mental and physical wellness, is supporting EDGI2 due to the heartbreaking loss of her daughter Jaimi, 33, to long-term health challenges, including anorexia nervosa.

 

“Too little is known about eating disorders, which affect over a million Australians.4

 

“Eating disorders remain among the most stigmatised mental health conditions. This stigma often prevents people from seeking help, making things worse,”5 said Ms Curry.

 

“Individuals and families affected by eating disorders deserve answers, earlier intervention, and personalised treatments that work.

 

“EDGI2 unites global experts to unravel the complex genetic and environmental puzzle behind eating disorders,” Ms Curry said.

“I urge every Australian aged 18+ with experience, past or present, of one of four eating disorders – anorexia nervosa, bulimia nervosa, binge-eating disorder or ARFID – to volunteer for this vital research.

 

“Head to edgi2.org.au or email edgi2@qimrb.edu.au to volunteer or learn more.


Recruitment closes December 31, 2025,” said Ms Curry.

According to Head of the Genetic Epidemiology Laboratory, QIMR Berghofer, and Lead Australian EDGI2 Investigator, Professor Nick Martin, Brisbane, this new study builds on the ground-breaking progress of the original EDGI investigation, and the collaborative Anorexia Nervosa Genetics Initiative (ANGI), which identified the first eight genes linked to anorexia nervosa, highlighting both psychiatric and metabolic causes of the illness.6

 

“This discovery was completely unexpected, and requires urgent replication and further study to fully understand the pathways leading to anorexia nervosa.

“That’s why a larger sample size is crucial, which is the aim of EDGI2,” said Prof Martin.

 

“While rigorous research shows genes account for more than half the risk of eating disorders,7 we still lack understanding and accurate tools to predict their progression, or response to treatment.”

 

The world-leading geneticist explains EDGI2’s strength will lie in its unprecedented scale and diverse, multi-country sample.

 

“Large-scale studies like EDGI and ANGI have demonstrated the genetic basis of eating disorders, and helped identify variations that can calculate an individual’s genetic risk.8

 

“A larger, more diverse sample will enhance our understanding of genetic risks, vulnerabilities, and protective factors, leading to earlier, more personalised treatments, and better predictions of disease progression and future risk,”8 Prof Martin said.

 

“With the Aussie spirit of volunteering, I’m confident we’ll reach our goal of 4,000+ EDGI2 participants.”

 

Clinical Psychologist, Director, InsideOut Institute, and EDGI2 Australia Chief-Investigator, Prof Sarah Maguire OAM, Sydney, explains eating disorders can affect people of any age, weight, size, shape, cultural background, or identity, and significantly compromise quality of life.

 

“They impact the individual, and their family in just about every way possible – professionally, personally, emotionally and psychologically.9

“Eating disorders can also have serious medical consequences.10, 11 They have a strong link to depression, anxiety, obsessive-compulsive symptoms, social isolation, and sometimes, suicide,”1, 12 said Prof Maguire.

 

“Their medical complications may include cognitive impairment, heart issues, growth retardation, and osteoporosis.10, 11

 

“The eating disorders mortality rate is significantly higher than other psychiatric conditions, mainly due to medical complications, and the rate of suicide,”13 Prof Maguire said.

“Importantly, eating disorders are treatable.14 Research advances like EDGI2, which enhance understanding of genetic and environmental factors, along with early detection and personalised treatment, are key to recovery and improved patient management.”15, 16

Executive Director, Eating Disorders Families Australia (EDFA), and lived-experience carer, Jane Rowan, Brisbane, emphasises “eating disorders are not a choice – they are serious mental illnesses.17

 

“However, with early intervention and a comprehensive approach that addresses the physical, psychological, and social aspects of an eating disorder, recovery is possible for everyone, regardless of severity or stage of illness,”14,18 said Ms Rowan.

 

Ms Rowan is a strong advocate for EDGI2.

 

"EDGI2 represents hope – not just for better treatments, but for a deeper understanding of eating disorders.

 

“Ultimately, EDGI2 will give families the answers we’ve been seeking for so long, and will help them to feel seen and supported,” Ms Rowan said.

 

Breathwork and meditation facilitator, empowerment coach, and cold immersion specialist, Elise, 39, Sydney, struggled with anorexia nervosa for 23 years. She has a family history of mental illness, suggesting a genetic predisposition to anorexia nervosa. 

 

At 12 years of age, a family member commented on Elise’s ‘pot belly’.

 

“It may have seemed harmless to them, but it was quietly devastating for me. It was a seed of self-consciousness I carried around for years,” said Elise.

 

After spiralling into restrictive eating and compulsive exercise, Elise was diagnosed with anorexia nervosa two years later – an illness that consumed every aspect of her teens.

 

"I went for long runs, spent hours at the gym, did sit-ups in my room – any form of exercise I could possibly do, I did.

 

“I was trying to ‘create control’ over the anxiety and chaos I felt, with an eating disorder.”

 

By the age of 20, Elise had made significant progress in her recovery. However, she experienced a relapse in her early twenties after a heartbreak, and another in her thirties. It was only then that she began to accept her anorexia nervosa. Now four years into recovery, Elise is deeply grateful to ‘have found healing’.

 

“EDGI2 is so important to me, because the idea that we could identify someone who has a genetic predisposition to an eating disorder, and prevent them from enduring what I did, makes me very hopeful,” said Elise.

EDGI2 participation involves:

  1. Providing informed consent and completing a short, 15–20 minute, online survey.        

  2. Following core survey completion, eligible participants will be asked to donate a saliva sample.

  3. Researchers sending a saliva collection kit together with a pre-paid return envelope to selected participants.

  4. EDGI2 researchers extracting DNA from saliva samples to identify specific genes associated with eating disorders.

AVAILABLE FOR INTERVIEW

LISA CURRY AO​

NB. Lisa Curry AO has provided an extensive, pre-recorded VNR interview + supporting overlay & audio grabs, which are available for download from our digital media kit: edgi2mediakit.org​​​

EDGI2 AUSTRALIA INVESTIGATORS

Professor Nick Martin

Head, Genetic Epidemiology, QIMR Berghofer Medical Research Institute & Lead Investigator, Eating Disorders Genetics Initiative (EDGI) 2, BRISBANE

Professor Sarah Maguire OAM

Chief Investigator, EDGI2 Australia, Clinical Psychologist & Director,
InsideOut Institute, SYDNEY

EDGI2 GLOBAL LEAD PRINCIPAL INVESTIGATOR

Professor Cynthia Bulik

Distinguished Professor of Eating Disorders; Founding Director, Centre of Excellence for Eating Disorders, University of North Carolina; Founder & Director, Centre for Eating Disorders Innovation at Karolinska Institute; & Principal Investigator, Eating Disorders Genetics Initiative (EDGI) 2, NORTH CAROLINA, USA & SWEDEN

OTHER EXPERTS

Annabel Johnston

Gut health dietitian & founder, Nutrition for Living, BRISBANE

Olivia Soha

Certified Eating Disorder Recovery Coach & Founder & Director of ‘Uncovery’ who lived with an eating disorder, MELBOURNE

Dr. June Alexander

Author, life-writing mentor, blogger, diarist & eating disorder advocate who lived with an eating disorder, GEELONG

Professor Tracey Wade

Matthew Flinders Distinguished Professor, College of Education, Psychology & Social, ADELAIDE

Professor Sarah Cohen-Woods

Professor of Psychology, Flinders University Institute for Mental Health and Wellbeing & Head of the Behavioural Genetic & Environmental Mechanisms Lab, Flinders University, ADELAIDE

Dr Bronwyn Raykos

Clinical psychologist, researcher & founder of Morgan Psychology,PERTH

Dr Tiegan Holtham

Clinical Psychologist, The Flourish Collective & Headspace, DARWIN

Natasha Berthold

PhD student, The University of Western Australia & The Perron Institute, & Visiting Scholar, University of North Carolina’s Centre of Excellence for Eating Disorders, NORTH CAROLINA, USA

PATIENT ADVOCACY GROUP REPRESENTATIVES

Jane Rowan

Executive Director, Eating Disorders Families Australia (EDFA) & lived experience eating disorder carer, BRISBANE

Mark & Gayle Forbes

Co-founders of mental health charity, endED, whose daughters have
both lived with an eating disorder, SUNSHINE COAST

Don Irvine

Father who became an eating disorder advocate after his eldest daughter’s decade-long battle with anorexia nervosa, PERTH

AUSTRALIANS WITH EATING DISORDER EXPERIENCE 

Lexi, 36

Clinical nutritionist who endured more than 25 hospitalisations with anorexia nervosa over 18 years, BRISBANE

Emily, 22

Peer mental health support worker who wrestled with bulimia nervosa & binge eating disorder for over seven years, BRISBANE

Tayla, 25

Dietitian & former elite athlete who waged a silent battle with anorexia nervosa, SUNSHINE COAST

Rosiel, 34

PhD student, eating disorder lived experience consultant & identical twin who battled anorexia nervosa for 25+ years, SUNSHINE COAST

Hayley, 24

Student, artist & aspiring teacher who struggled with anorexia nervosa for nine years, GOLD COAST

Elise, 39

Breathwork & meditation facilitator, empowerment coach, cold immersion specialist who lived with anorexia nervosa for 23 years, SYDNEY

Vanessa, 48

Counsellor who wrestled with binge eating disorder for 25 years, SYDNEY

Sophie, 33

Postdoctoral neuroscience researcher with a family history of eating disorders who struggled with anorexia nervosa for 15 years, SYDNEY

Beck, 37

Lived with anorexia nervosa for 14 years, SYDNEY

Liam, 27

Chief Commercial Officer in custom technology development who grappled with anorexia nervosa for eight years, NEWCASTLE

Kaylee, 26

Creative art therapist & disability support worker whose

anorexia nervosa robbed her childhood, WOLLONGONG

Jenni-Lee, 66

Author, speaker, award-winning writer & counsellor who grappled with anorexia nervosa for nine years, ADELAIDE

Lauren, 35

Mental health peer support worker & mother-of-three who battled anorexia nervosa for 14 years, ADELAIDE

Shannon, 48

Lived experience educator & dog lover who grappled with anorexia nervosa & bulimia nervosa for more than three decades, PERTH

Sophie, 27

Aspiring primary school teacher who wrestled with other specified feeding or eating disorder (OSFED) from 15 years of age, PERTH

MEDIA CONTACTS + INTERVIEWS

Kirsten Bruce & Sam Jacobs, VIVA! Communications

M 0401 717 566 | 0422 654 404

T   02 9968 3741 | 02 9968 1604

E   kirstenbruce@vivacommunications.com.au |       sam@vivacommunications.com.au

Should you suspect you, or a loved one, may be living with an eating disorder, speak to your local healthcare practitioner without delay, or head to insideoutinstitute.org.au to complete their online screener and assessment, and to access more information and professional support.

 

Australian professional patient support services offering 24/7 helpline services include:

 

  • Butterfly National Helpline: 1800 334 673

  • Beyond Blue: 1300 22 4636

  • LifeLine: 13 11 14

  • Men’s Line Australia: 1300 78 99 78

  • Kids Help Line: 1800 55 1800

References

  1. National Eating Disorders Collaboration. What is an Eating Disorder? [Website]. 2024 [Available from: https://nedc.com.au/eating-disorders/eating-disorders-explained/whats-an-eating-disorder].

  2. National Eating Disorders collaboration. Risk & Protective Factors 2025 [Available from: https://nedc.com.au/eating-disorders/eating-disorders-explained/risk-and-protective-factors].

  3. Grilo CM. Treatment of Eating Disorders: Current Status, Challenges, and Future Directions. Annu Rev Clin Psychol. 2024;20(1):97-123.

  4. National Eating Disorders Collaboration. Eating Disorders in Australia 2025 [Available from: https://nedc.com.au/eating-disorders/eating-disorders-explained/eating-disorders-in-australia].

  5. Kurdak H, Tiyekli E, Özcan S, Özer ZY, Nur Topuz A. Eating disorders, primary care, and stigma: an analysis of research trends and patterns. Front Psychiatry. 2023;14:1243922.

  6. Watson HJ, Yilmaz Z, Thornton LM, Hübel C, Coleman JRI, Gaspar HA, et al. Genome-wide association study identifies eight risk loci and implicates metabo-psychiatric origins for anorexia nervosa. Nature Genetics. 2019;51(8):1207-14.

  7. Berrettini W. The genetics of eating disorders. Psychiatry (Edgmont). 2004;1(3):18-25.

  8. Lewis CM, Vassos E. Polygenic risk scores: from research tools to clinical instruments. Genome Medicine. 2020;12(1):44.

  9. van Hoeken D, Hoek HW. Review of the burden of eating disorders: mortality, disability, costs, quality of life, and family burden. Curr Opin Psychiatry. 2020;33(6):521-7.

  10. National Eating Disorders Collaboration. Co-occuring conditions 2024 [Available from: https://nedc.com.au/eating-disorders/types/co-occurring-conditions].

  11. National Eating Disorders Collaboration. Eating disorders: identification and response 2022 [Available from: https://nedc.com.au/assets/Fact-Sheets/Screening-identification-referral-guide.pdf?2024121105].

  12. Tan EJ, Raut T, Le LK-D, Hay P, Ananthapavan J, Lee YY, et al. The association between eating disorders and mental health: an umbrella review. Journal of Eating Disorders. 2023;11(1):51.

  13. Hambleton A, Pepin G, Le A, Maloney D, Aouad P, Barakat S, et al. Psychiatric and medical comorbidities of eating disorders: findings from a rapid review of the literature. Journal of Eating Disorders. 2022;10(1):132.

  14. Eating Disorders: What You Need to Know: National Institute of Mental Health 2024 [Available from: https://www.nimh.nih.gov/health/publications/eating-disorders#:~:text=Eating%20disorders%20can%20be%20treated,thoughts%2C%20and%20behaviors%20about%20food.].

  15. Eating Disorders: Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders. AED report 2021. 2021;4th edition.

  16. Donato K, Ceccarini MR, Dhuli K, Bonetti G, Medori MC, Marceddu G, et al. Gene variants in eating disorders. Focus on anorexia nervosa, bulimia nervosa, and binge-eating disorder. J Prev Med Hyg. 2022;63(2 Suppl 3):E297-e305.

  17. Ivancic L, Maguire S, Miskovic-Wheatley J, Harrison C, Nassar N. Prevalence and management of people with eating disorders presenting to primary care: A national study. Aust N Z J Psychiatry. 2021;55(11):1089-100.

  18. Early Intervention: National Eating Disorders Collaboration;  [Available from: https://nedc.com.au/eating-disorders/early-intervention].

MEDIA CONTACTS
Kirsten Bruce & Sam Jacobs VIVA! Communications

M         0401 717 566 | 0422 654 404

E          kirstenbruce@vivacommunications.com.au | sam@vivacommunications.com.au

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