Eating Disorders Families Australia - Annual Report
Acknowledgement of Country
Eating Disorders Families Australia (EDFA) would like to acknowledge the Aboriginal and Torres Strait Islander peoples as Australia’s First People and Traditional Custodians. We value their cultures, identities, and continuing connection to country, waters, kin, and community. We pay our respects to elders past and present. Storytelling plays an important role in Aboriginal and Torres Strait Islander
cultures as a way of passing on knowledge and learning. This resonates strongly with us at EDFA as we believe in the power of storytelling to reduce stigma and generate a greater understanding of the family experience of eating disorders. EDFA is committed to providing a culturally safe workplace for Aboriginal and Torres Strait Islander peoples.
Acknowledgement of Lived Experience
EDFA would like to acknowledge those with a lived or living experience of mental ill-health as well as those who are caring or have cared for those with mental ill-health.
EDFA AND OUR OFFERING
EDFA is the only national organisation providing support, education, advocacy, and counselling SOLELY for carers and families impacted by an eating disorder.
EDFA is a registered Australian mental health charity established in Melbourne in 2016 by a group of passionate parents who were caring for a child with an eating disorder. Our focus is now national and includes all carers and families of those of all ages with eating disorders, including partners, siblings, grandparents, and friends.
EDFA is proud to be the national voice of those caring for someone with an eating disorder.
We believe in the power of lived experience and sharing knowledge with others to reduce the distress the whole family endures.
Lived experience is the foundation of all four of the organisation’s services – support, education, advocacy, and counselling – and the organisation believes families and carers should be recognised for their role as the front line of the recovery team.
The organisation takes an unbiased approach to treatment, clinicians, and pathways of care, knowing that every recovery journey is different and what may work for one family may not work for another. Through research and our support, education, and evidence-based counselling services grounded in the lived experience of those who have been through it before, we help families navigate a complex system to improve recovery outcomes.
Our Offering
Through its nationwide offering, EDFA empowers families and carers to advocate for their loved ones’ needs and personal role in the recovery journey.
National
Online Support Groups
Frequent general and targeted support groups for adult carers and siblings facilitated by trained, lived experience carers.
Fill The Gap Counselling Service
Free, one-on-one, online counselling delivered by qualified counsellors with lived experience. No waitlists or referrals are required. Podcasts
Monthly Strong Enough podcasts featuring livedexperience carers, leaders in the field of research and specialists in education, advocacy, and self-care.
Online Support Forum
Private Facebook group, providing online lived experience peer support and daily connection with other carers.
Advocacy
EDFA advocates for eating disorder carers by representing carers in important government and organisational meetings and public hearings. We also provide carers with information and opportunities to share their voices in important advocacy campaigns and encourage them to participate in shaping important policies such as the National Eating Disorders Strategy and the National Carers Strategy.
EDucation Webinars
Two education webinars each month presented by eating disorder experts and lived experience speakers.
Annual Membership
EDFA offers Individual membership ($35 p.a.) and Family membership ($55 p.a.) options. Membership provides the support and resources needed to care for your loved one including: a Welcome Pack; access to over 90 support groups and education webinars per year; access to more than 160 hours of webinar recordings in our digital library; access to digital educational resources, and monthly mindfulness and meditation sessions.
EATING DISORDERS AND THE EATING DISORDER LANDSCAPE
Eating Disorders
Eating disorders are a group of serious, complex, and life-threatening mental illnesses often characterised by disturbances in behaviours, thoughts and attitudes about food, eating, and body weight or shape.
Eating disorders have detrimental impacts upon a person’s life and result in serious medical, psychiatric, and psychosocial consequences.1
While eating disorders have historically been perceived to primarily impact women and girls, they impact individuals of different gender identities, racial, cultural, linguistic and ethnic backgrounds, physiologies, ages, socioeconomic statuses, and locations.2
*Refer to P36 for sources
The Eating Disorder Landscape
The Challenges We Face
The COVID-19 pandemic caused a significant increase in eating disorders between 2020 and 2022, triggered by the significant social changes that occurred during this time including shifts in social routines, physical isolation, and disruptions to accessing healthcare.
A systematic review of 75 international studies conducted in 2022 found an increase in disordered eating behaviours associated with the COVID-19 pandemic.3 It is fair to assume there was a similar trend in Australia.
There is a growing body of evidence showing that eating disorders also have a significant impact on those around the person living with the eating disorder, including parents, siblings, partners and spouses, extended family members, friends, and colleagues.
The Essentials
Prevention, early intervention, better treatment options, and a greater focus on relapse prevention are essential for both the person with the eating disorder and their families. Greater community awareness and a reduction in stigma are also needed to ensure families receive the support they need.
*Refer to P36 for sources
A 2023 study undertaken by a member of EDFA’s Research Committee found that parents caring for a child with an eating disorder reported impacts associated with: 96.0% Their psychological health 70.5% Their physical health 92.7%
Their romantic relationship 70.1%
Their work, in terms of days of leave taking care of a child
$10,001$20,000 Their finances (with $10,001-20,000 median out -of-pocket expenses)4
Facts
1 2 3
At least 1.1 million Australians are currently living with an eating disorder ⁵, which means that at least 4.4 million Australians are impacted by an eating disorder.
Families and carers of those living with an eating disorder often experience heightened levels of stress, anxiety, depression, and social isolation.⁶
Families and carers are at the front line of care and crucial to their loved one’s recovery.
4.45% of Australians had an eating disorder diagnosis in 2023
Eating Disorder Prevalence
In 2023, 4.45% of Australians had an eating disorder diagnosis, equating to 1.1 million Australians, while 1.7 million people will be diagnosed with an eating disorder in their lifetime. Most diagnoses occur during adolescence, with highest rates in those aged 15-19. Women are disproportionally affected, accounting for two-thirds of eating disorder diagnoses.⁵
$67b cost of eating disorders to the Australian economy in 2023
Cost to Society
There are extensive social and economic costs associated with eating disorders. In 2023, the total economic and social cost of eating disorders in Australia was $67 billion, up 36% since 2012, and equivalent to $60,654 per person with an eating disorder.⁵
*Refer to P36 for sources
Public Investment
Research has identified a range of successful interventions for eating disorder prevention and early intervention, but public investment in Australia is low.
For example, in Queensland, an average of $681 is spent for each eating disorder episode of care, significantly lower than for other mental illnesses (anxiety disorders = $1,065 per episode, depressive disorders = $2,549 per episode).⁷ Successful recovery is often dependent on dedicated involvement from carers. However, recognition and support of carers in Australia is inadequate. Much of the increased eating disorder funding from the Federal and some State Governments is focussed on the person with the eating disorder, with few funds dedicated specifically for carer support.
Impact on Families and Carers
As the prevalence of eating disorders increases, families and carers find themselves under mounting pressure to provide the necessary care, while the scarcity of well-funded eating disorder prevention and treatment interventions in Australia also exacerbates this burden. This underscores the urgent need for improved support for families and carers. Where carers are properly supported, they are better able to care for their loved one with an eating disorder, and this can improve eating disorder outcomes.
*Refer to P36 for sources
EDFA Executive Director Jane Rowan and Federal Health Minister Mark Butler at the National Eating Disorders Strategy launch
Carer Jo Foggo shares her story for an EDFA video
FY24 HIGHLIGHTS
Message from Jane
It has been a landmark year in the eating disorder sector. The launch of the National Eating Disorders Strategy in August 2023 and the advocacy efforts of Australian of the Year, Taryn Brumfitt, in championing positive body image have been pivotal.
We’ve also seen eating disorders take centre stage in Federal Parliament, with Independent Zoe Daniel MP and the Parliamentary Friends of Eating Disorders leading important discussions on the impact of social media on body image and eating disorders.
For Eating Disorders Families Australia, 2023/24 has been a year of immense progress. From the launch of our Fill The Gap counselling service to successful campaigns such as Bye Bye BMI and Let Them Be Kids, we've made a significant contribution to changing the experience for families affected by eating disorders. Other notable accomplishments include the debut of our Strong Enough podcast series and our event with the Speaker of the House of Representatives, the Hon. Milton Dick MP, in Canberra to raise awareness of the family experience of eating disorders.
The following highlights reflect the incredible impact of our small, but mighty team this year.
EDFA Executive Director Jane Rowan addresses guests at the Speaker's event in Canberra
July 2023
• EDFA confirms its first Recharge 4 Recovery fundraising campaign raised $44,570. EDFA member Susan Gurrie from Victoria became the owner of the EDFA ‘Hope’ Pendant through an online auction.
• Research Committee Chair and EDFA Director Associate Professor Andrea Phillipou steps down on July 31.
August 2023
• EDFA launches its monthly Mindfulness and Meditation Sessions for eating disorder carers with Amanda Goodfellow on August 2.
• EDFA makes a submission to the Federal Parliamentary Inquiry into Unpaid Carers on August 11.
• EDFA is a silver sponsor at the Australia and New Zealand Academy for Eating Disorders (ANZAED) Conference on the Gold Coast, Qld from August 24-26.
• EDFA Executive Director Jane Rowan attends the launch of the National Eating Disorders Strategy in Melbourne on August 30, where she presented as part of a lived-experience panel.
• Professor Genevieve Pepin becomes Research Committee Chair and an EDFA Director.
September 2023
• The eating disorder sector promotes the theme Now Is The Time To Act for Body Image and Eating Disorder Awareness Week (Sept 4-10).
• EDFA participates in an important discussion about the impact of social media on body image with Executive Director Jane Rowan attending Zoe Daniel MP’s Roundtable at Parliament House in Canberra on September 14.
October 2023
• Launch of EDFA’s Fill The Gap Counselling Service on October 10.
• EDFA celebrates National Carers Week 2023 (October 15–21) by hosting several in-person coffee catchups. Events were held in Melbourne, Sydney and Brisbane.
• The 2023 Carer Feedback Survey results are released, which include a finding that 81% of carers believed social media has either contributed to the development of their loved one’s eating disorder or has hampered their recovery.
• EDFA unveils its New Logo representing its four service pillars – support, education, advocacy, and counselling – on October 31. The four-cornered purple rectangle symbolizes the tower of strength carers embody during their loved one’s recovery journey.
November 2023
• Launch of EDFA’s Strong Enough Podcast Series on November 22. Thanks to member-driven fundraising, EDFA’s new podcast series now offers global support to carers.
• EDFA launches its revamped Video Library and New Zealand Subscription Service
December 2023
• EDFA holds its Annual General Meeting on December 11. Board Chair David Garvey and Treasurer Lisa Pendlebury are farewelled.
• Four new directors were appointed: Janis Carren, Dr Palmyra De Banks, Kathryn Hutchins and Nicholas Steele –and David Quilty becomes Acting Chair.
January 2024
• Significant media coverage of the Bye Bye BMI Campaign in the lead up to the start of the school year. EDFA’s collaboration with parent advocate Kylie Burton and the Embrace Collective led to critical curriculum changes, including the removal of over 340 harmful BMI references.
• New Treasurer Kyra Bennett is welcomed to EDFA and Jennifer Paterson becomes Deputy Chair of the Board.
February 2024
• EDFA holds its annual In-Person Operations Team Meeting in Melbourne from February 20-21.
March 2024
• EDFA Executive Director Jane Rowan attends the launch of the Butterfly Foundation and Deloitte’s Paying the Price Report on March, which showed a 21% increase in eating disorders in Australia since 2012, with 1.1 million Australians currently affected. The $67 billion economic cost and 1,273 deaths in 2023 underscore the urgent need for more effective prevention and treatment strategies.
• The Speaker of the House of Representatives, the Hon. Milton Dick MP, hosts an event for EDFA in Canberra on March 20. With more than 50 in attendance, the event successfully raised awareness among Federal Parliamentarians of EDFA’s services and the experiences of families caring for loved ones with eating disorders.
• Evaluation of EDFA’s support groups
“Striving to Support the Supporters: A Mixed Methods Evaluation of the strive Support Groups for Caregivers of Individuals with an Eating Disorder” is published in the European Eating Disorders Review.
April 2024
• After-hours appointments with the Fill The Gap counselling service now available.
May 2024
• By mid-May, the Fill The Gap counselling service exceeds its 2023/24 session target of 787 sessions.
• The 2024 Carer Experience Survey results are released, showing a decline in carers’ mental health with 35% rating their mental health as poor or very poor, up from 28% last year.
• EDFA raises awareness of the support available for families of those living with an eating disorder at the General Practice Conference & Exhibition in Sydney from May 24-26.
• The Social Media and Body Image Roundtable Recommendations are released on May 28 with Executive Director Jane Rowan attending the event at Parliament House in Canberra.
• Free EDFA membership is offered to Victorian carers and families through a partnership with Carer Gateway.
June 2024
• EDFA’s second annual Recharge 4 Recovery fundraising campaign is held. The campaign emphasises self-care, offering free Renew and Recharge workshops led by experienced facilitators.
• Executive Director Jane Rowan joins mental health advocates and families in Canberra on June 4-5 as part of News Corp’s Let Them Be Kids Campaign. The group meets with many Federal Parliamentarians to call for stricter social media access regulations to protect young people.
• The Fill The Gap counselling service surpasses 1,000 sessions.
• EDFA makes a submission to the Joint Select Committee on Social Media and Australian Society on June 28.
EDFA Executive Director Jane Rowan and Fill The Gap Program Director Chris Fowler at the GPCE Sydney 2024
OUR BOARD OF DIRECTORS
Words from Acting Chair
It is a privilege to be Acting Chair of EDFA, the only national organisation focussed solely on representing and supporting the families and carers of loved ones with an eating disorder.
In December 2023, David Garvey retired as Chair of EDFA. We thank David for his enormous contribution along with that of Lynn Garvey for her tireless work supporting hundreds of families and carers and building EDFA’s successful EDucation webinars.
2023/24 was a year of highlights for EDFA as we strove to empower and provide practical support for families and carers around Australia. Our Fill the Gap online counselling service started in October 2023 and demand has exceeded expectations. We encourage carers and families to use this free service provided by Masters’ level counsellors with eating disorders lived experience.
EDFA’s successes during 2023-24 have been made possible by the exceptional work of our highly committed staff team, so ably led by our amazing Executive Director, Jane Rowan. We are also greatly indebted to our passionate volunteers, including our support group facilitators, Facebook community moderators, and board directors.
Last but definitely not least, thank you to our growing number of philanthropic partners, donors and funders for your generosity and support of such a worthy area of need.
EDFA is eight years young. We have grown from very humble beginnings, but our commitment to be there for families and carers when they need us is stronger than ever.
David Quilty - Acting Chair
Our Board
EDFA is governed by a Board of Directors, the majority of whom have lived experience as a carer.
The Board is committed to supporting families and carers of people with an eating disorder.
• David Quilty, Acting Chair
• Jennifer Paterson, Deputy Chair
• Jane Rowan, Executive Director
• Fiona Mitchell, Director
• Genevieve Pepin, Director
• Janis Carren, Director
• Nick Steele, Director
• Palmyra De Banks, Director
• Kathryn Hutchins, Director
• Kyra Bennett, Treasurer and Company Secretary
OUR TEAM
The organisation is supported by a largely part-time workforce equating to 7.7 full-time equivalent staff, assisted by a small army of volunteers.
Leadership Team
• Jane Rowan, Executive Director
• Chris Fowler, Fill The Gap Program Director
• Alex Kisilevich, National Support and EDucation Manager
• Janine Soubachov, National Marketing and Communications Manager Team
• Sallie Egglestone, Lead Facilitator and Moderator
• Nhi Nguyen, Administration Assistant/ Marketing and Communications Coordinator
• Rowena Brookes, Fill the Gap Counsellor
• Angie Sloan, Fill the Gap Counsellor
• Alisha Mah, Fill the Gap Counsellor
• Susan Donald, Fill the Gap Administration Assistant
• Laura McCosker, Research and Evaluation Assistant
• Merril Bohn, EDucation Volunteer
OUR COMMITTEES
At June 30, 2024, EDFA had three committees comprising Research, Grants and Fundraising with plans to introduce a Finance and Risk Committee in 2024/25.
Research Committee
“We
are grateful to EDFA for its support, and we are excited about more research activities to come!”
Prof Genevieve Pepin - EDFA Research Committee Chair
The Research Committee exists to embed research into the activities run by EDFA including the evaluation of EDFA programs; and undertaking research projects specifically on improving the mental health of families and carers. The Committee includes leading eating disorder researchers from Australia’s top universities including Deakin University and The University of Melbourne.
FY24 Research Committee Highlights
The Research Committee has continued to strengthen EDFA’s research activities and outputs in 2023/24. Aviva Lefkovits completed her Masters project and published a paper titled ‘Striving to Support the Supporters: A Mixed Methods Evaluation of the STRIVE Support Groups for Caregivers of Individuals with an Eating Disorder’ in the European EatingDisordersReview . Aviva, supervised by EDFA Research Committee members Associate Professor Isabel Krug and Professor Genevieve Pepin, explored the then called STRIVE program. Findings from Aviva’s master provide support for the importance and overall positive contribution of support groups led by carers, such as STRIVE. In addition, and thanks to Executive Director Jane Rowan, the ABC ran a story related to Aviva’s research project.
Scan the code for more information on our Research Committee
A new honours project looking at the experience of carers of young people with ARFID is underway. In addition, ethics applications are being completed to support publication of important findings from the Carers Experience Surveys and from the Fill the Gap counselling service. The team at EDFA, led by Laura McCosker and Angie Sloan, is working on a systematic review of the literature exploring potential links between ARFID and developing other eating disorders later in life. The team is also developing abstracts to be submitted to the 2025 London Eating Disorder Conference.
Finally, the EDFA Research Committee was pleased to expand with the addition of Dr Marianne Wyder, Dr Simon Wilksch and Dr Lyza Norton in 2023/24.
Committee Members
Research Committee
• Professor Genevieve Pepin, Deakin University (Chair)
• Isabel Krug, The University of Melbourne (Associate Professor)
• Dr Lyza Norton, The University of Melbourne
• Dr Simon Wilksch, Flinders University
• Dr Marianne Wyder, Metro South Health
• Laura McCosker, EDFA
Grants Committee
• Fiona Mitchell (Chair)
• Jane Rowan
• Vesna Stefanovski
• Lynn Sweeney Grants Committee
• David Garvey (Chair)
• Lisa Pendlebury
• Jane Rowan
• Helen Smith
• Rohan Wastell
OUR STRATEGY
Purpose Through leadership, education, and research, EDFA improves the lives of eating disorder carers.
We work to create stigma-free communities where eating disorder carers are recognised for their vital role and receive the assistance they need. We achieve better outcomes for those with eating disorders by helping their carers to navigate the complex healthcare system.
Mission To enable families and carers to be effective supports and recognised as central members of the recovery team for a loved one with an eating disorder.
Vision
Families and carers impacted by an eating disorder are recognised, supported, educated, and empowered.
Our vision for the next five years of EDFA’s development is ambitious, but it is rooted in the unwavering belief that every family touched by an eating disorder deserves understanding, empathy, and access to the resources necessary for recovery. By 2028, we want eating disorder families to receive timely and effective support from all facets of our community, including heath care professionals, the government, and the general public. We expect families and carers to be placed at the centre of the treatment and recovery team, regardless of the age of their loved one, and to be valued as an essential partner on this journey.
EDFA is keen to see the National Eating Disorders Strategy fully implemented with every aspect of its stepped system of care established. EDFA is committed to working collaboratively across the eating disorders sector to effect this implementation, to reduce duplication of effort, and to maximise outcomes for all impacted by eating disorders. This philosophy underpins our strategy and informs all our activities.
EDFA’s Strategic Plan is a documented commitment to the individuals and families whose lives have been touched by the often-hidden struggle of eating disorders. Together, we will work tirelessly to create a future where every person affected receives the understanding, support, and care they deserve.
Values
EDFA’s values inform the way we work and deliver on our 2024-2028 Strategic Plan.
The most important value that reflects the long-standing core principles of the EDFA community is Hope.
Annual EDFA in-person team meeting in Melbourne (February 2024)
Hope:
Underpinning everything we do is a strong belief we can make a difference to the lives of carers. We know recovery is possible for those living with eating disorders.
Empathy:
We are best placed to support families and carers guided by our own lived experience journeys.
Innovation:
We are focused on continuous improvement - in our activities, in supporting carers, and in evidence-informed services for those living with eating disorders.
Respect:
We are member and carer-focused, respectful, and compassionate.
Collaboration:
We collaborate with stakeholders, we are inclusive, we embrace the value of diversity, and we create and faithfully represent our constituency.
Integrity:
We are credible, a sound investment, honest, transparent, and reliable. We embrace research-informed, quality methods.
OUR ORGANISATIONAL GOALS BY 2028
Skilled and Resilient Carers
• Well-subscribed EDFA services established in all Australian states and territories.
• Establishment of prevention and early intervention programs to help families and carers reduce the amount of time it takes to recover from an eating disorder.
• Advocate at the state and national level for broader support for carers during treatment and recovery.
• Sufficient resources and services to enable carers to quickly and easily navigate the healthcare system.
The National Peak Organisation for Eating Disorder Carers
• Increase awareness of EDFA among carers, clinicians, researchers, government, and the public.
• Collaboration with national and state eating disorder organisations.
Improve Treatment and Supports
• Contribute to research addressing carers’ lived experience and role in treatment and recovery.
• Advocate for the closure of treatment gaps and inclusion of carers in the treatment team regardless of the loved one’s age.
• Community education campaigns.
• Support translation of innovative research into practice with valuable stakeholder input.
Strategic Approach
We envisage a future where families and carers receive comprehensive support to assist a loved one through eating disorder recovery and where their vital role at the front line of the recovery team is recognised and acknowledged not only by the other members of that team, but by our communities.
Strategic Pillars Impact:
Investing in essential, scalable programs and activities to create a real impact on the ability of our carers to support a loved one through eating disorder recovery.
Influence:
Becoming a leading and trusted voice to positively influence the systems and relationships that determine a carer’s ability to effectively manage and maintain their role at the front line of the recovery team.
Sustainability:
Strengthening our position as a sustainable charity that has adequate resources to support our strategic goals and vision.
Eating Disorder Carers
EDFA recognises that each eating disorder caring situation is unique and that no two people – those giving care or those receiving care – are the same.
A carer can be anybody who provides personal care or support to an individual experiencing an eating disorder. Carers mirror the diversity of the Australian population, and include people of
different ages, genders, cultural and socioeconomic groups and locations. Care relationships can be short-term, long-term, temporary, or episodic.
EDFA also recognises that many people do not identify as carers regardless of the significant support and assistance they give to a person with an eating disorder.
Aboriginal and Torres Strait Islander People
Emerging research informs us that Aboriginal and Torres Strait Islander people experience eating disorders and body image issues at like rates to other people in Australia.
Approximately 3 in 10 Aboriginal and Torres Strait Islander people experience an eating disorder.
EDFA has taken active steps to ensure that our offering is accessible to Aboriginal and Torres Strait Islander people in a multitude of ways including:
• All services are available online, thereby making them accessible to Aboriginal and Torres Strait Islander people living in rural, regional, and metro areas across Australia.
• Our entire offering, aside from annual membership, is free, including our Fill The Gap counselling service.
• We have secured government funding for our Fill The Gap counselling program to engage
an Aboriginal or Torres Strait Islander counsellor in late 2024. This will pay a vital role in reducing anxiety and improving the quality of communication for Aboriginal and Torres Strait Islander clients through cultural brokerage. Fill The Gap counsellors are located across the country, and we are able to offer after-hours counselling sessions, thereby increasing accessibility.
• EDFA’s entire staff will undergo cultural training in July 2024 to ensure we understand the key cultural differences of Aboriginal and Torres Strait Islander people and that our offering is culturally appropriate.
• We have engaged a cultural specialist from July 2024 to inform our offering, communication, and policies.
EDFA recognises the need for culturally appropriate eating disorder carer support and services for Aboriginal and Torres Strait Islander people, that increase access and engagement in services and ultimately contribute to improved health outcomes for Aboriginal and Torres Strait Islander people.
OUR SERVICES
Support
EDFA’s Support Program has reached 633 carers throughout FY24, through delivery of 101 Carer Support Groups.
Carer feedback has provided incredible insight into their needs. With many carers reporting feeling overwhelmed, we developed the ‘Carer Wellbeing Event’ program, delivering dedicated events where carers can focus on their own well-being,instead of the all-encompassing eatingdisorder.
We also revamped the Sibling Support Group, dedicating the space to carers aged 18 and over.
This has helped keep the focus on adults who are caring for a brother or sister with an eating disorder, an often-forgotten carer group and many of whom are not even aware they may be acting as a carer.
Our Support Program includes a closed Facebook group for carers, providing a supportive community and a safe, confidential, comfortable space for adult carers. The group provided a platform for carers to share knowledge and encouragement, and importantly, provide hope with stories of recovery. The Facebook group has grown by 250 carers in FY24, the year ending with 1,973 in the group, a testament to the support carers receive in that space.
Overall, in FY24 our Support Program was further enhanced. Building on our volunteer training program and core governance, we are proud to offer a service supporting all carers around Australia.
In numbers
633
Carers reched through EDFA’s support programs in FY24
101
Carer Support Groups held throughout FY24
250
New carers joined our facebook group in FY24
1,973
Total members in facebook group.
EDucation
Guest speakers throughout FY2024:
As
a lived experience organisation, we were proud to share stories of those with their own lived experience; presentations included speakers from some of our own members, as well as Tully Humphrey, Carolyn Costin, and Hope Virgo.
Stories of lived experience give strength and hope to families that their loved ones can recover and lead fulfilling lives. They also provide families with strategies for refeeding and connecting with their loved one.
Webinars also featured clinicians focusing on the medical and nutritional aspects of dealing with an eating disorder in the family. Experts explored the diagnostic guidelines, GP management of eating disorders, strategies for re-introducing food to those with Avoidant/Restrictive Food Intake Disorder (ARFID), and the interplay of eating disorders with common presentations, such as autism, Postural Orthostatic tTchycardia Syndrome and trauma.
As EDFA takes an unbiased approach to treatment, clinicians, and pathways of care, we are proud to have shared knowledge from speakers on different treatments and approaches, such as Emotion Focused Family Therapy (EFFT) and the new Maudsley Approach.
As part of the EDucation Program, we have also added many new fact sheets to our library of resources for members. By presenting the current evidence with a lived-experience lens, carers can gain a greater understanding of their loved one’s experience and learn new strategies to support recovery.
We have many exciting initiatives coming for FY25, including making our webinar library available to clinicians as well as carers in New Zealand.
Advocacy
Throughout the year, EDFA continued to advocate for carers and families impacted by an eating disorder.
EDFA, as a member of the Eating Disorders Alliance of Australia (EDAA), welcomed the 10-year National Eating Disorders Strategy that was launched on August 30, 2023, to drive urgent reform. The comprehensive strategy outlines key steps needed to tackle Australia’s growing eating disorder crisis. EDFA supports the strategy’s recognition of families and carers as an integral part of the recovery team and a clear focus on ensuring they have the support they need.
In October 2023, the Australian Government announced the development of a new National Carers Strategy and invited carers to contribute to the development of the strategy to ensure that they have the supports and services necessary to partake fully in society and realise their caring roles. EDFA Executive Director Jane Rowan was appointed to the National Carers Strategy Advisory Committee in 2024 and continues to represent eating disorder carers in this capacity on an ongoing basis.
EDFA was proud to collaborate with The Embrace Collective and EDFA parent advocate and educator Kylie Burton to secure important changes to the Australian School Curriculum version 9.0, aimed at making school safer for students at risk of developing an eating disorder or experiencing an eating disorder relapse. Through the Bye Bye BMI campaign, changes have been made to the Australian Curriculum’s supporting documents that will prevent teachers from asking students to calculate their BMI, as well as using the words “good” and “bad” to describe food.
The changes will help to protect vulnerable students from developing an eating disorder or experiencing an eating disorder relapse. EDFA applauds the Australian Curriculum Assessment and Reporting Authority (ACARA) for working with Kylie, EDFA and Embrace to remove hundreds of references to BMI, weight, calories, diet and the word “healthier” from school resources and replacing them with terms such as “balanced nutrition”.
In May 2024, EDFA supported News Corp Australia’s ‘Let Them Be Kids’ campaign, aimed at protecting young Australians from the dangers of social media. The campaign called on the Federal Government to increase the age children can access social media platforms to 16 years.
EDFA’s Carer Experience Survey, conducted in October 2023, revealed:
of its carers believe that social media has caused their loved one’s eating disorder or hampered recovery.
In June 2024, EDFA made a submission to the Joint Select Committee on Social Media and Australian Society, calling for an increase in the age of social media access to 16+, the implementation of effective age verification measures, and education and resources for young people and parents regarding social media.
We also made a submission to the Federal Parliamentary Inquiry into Unpaid Carers.
Counselling
October 10, 2023
• EDFA launched its Fill The Gap (FTG) program on October 10, 2023. The free online counselling service for carers commenced with two part-time counsellors and the Program Director offering sessions five days a week.
In its first month, it provided 77 sessions to carers.
June 30, 2024
• By June 30, 2024, FTG had provided support to 317 carers through 1,075 sessions.
• This exceeded the session target by 37%. The service has provided sessions to carers across all states and territories in Australia.
• Carers using the service have been mostly parents, however, the service has supported partners, siblings, grandparents, and friends of a loved one with an eating disorder.
March, 2024
• In March 2024 FTG had the opportunity to deliver early positive outcomes of the service at an event in Canberra hosted by the Speaker of the House of Representatives.
April 2024
• A third full-time counsellor from Western Australia joined the team in April 2024, allowing FTG to offer more sessions across the week as well as after-hours bookings.
Analysis of FTG feedback surveys found that by their sixth session, most carers reported improvements in most measures related to their own wellbeing and to their loved one’s eating disorder.
Feedback has been consistently positive from carers who have expressed how grateful they are for the service which is fully funded by the Australian Government.
They have reported the program has benefited them because:
• The counsellors have lived experience as a carer
• It is a place for carers to verbally offload / debrief
• It allows them to develop strategies, skills and knowledge
• It is a free and highly accessible program
• It guides them to other resources
OPERATIONAL EFFECTIVENESS AND SERVICE EXCELLENCE
This year, Eating Disorders Families Australia has worked hard to ensure we operate efficiently and effectively to deliver the best outcomes for our carers and in line with our 2024-2028 Strategic Plan.
This work has resulted in significant improvements to EDFA’s website to enhance the user experience, making navigation easier and more seamless as carers access our services. We have worked with an external IT consultant to streamline the provision of our services through various software platforms and to develop more effective IT governance. We have engaged with an external IT support service to ensure our team is able to work in a secure and safe technology environment. In FY25, all EDFA staff will undertake cybersecurity training on a regular basis.
EDFA Deputy Chair Jennifer Paterson, Executive Director Jane Rowan, National EDucation Program Manager Alex Kisilevich and Board Member Kathryn Hutchins at the InsideOut Think Tank 2024.
EDFA continues to evaluate its services through regular surveys of our community and clients. Feedback from these surveys is used to ensure continuous improvement of our programs to meet the needs of our carers. As a result of feedback, EDFA’s Fill The Gap team introduced after-hours appointments and is constantly assessing session availability to meet demand from our carers. EDFA also commenced working towards National Safety and Quality Digital Mental Health Standards (NSQDMHS) in May 2024. This accreditation is designed to ensure high standards of care, improve the quality of digital mental health service provision, and protect service users from harm.
As we grow, EDFA’s commitment to working more closely with underserved populations underscores our activities. This included support for key calendar events like NAIDOC Week and Body Image and Eating Disorder Awareness Week, and ensuring diverse identities were represented across our website and social media channels. We also joined with Australia’s national eating disorder organisations for the ‘EveryBody Welcome’ campaign to highlight eating disorder and body image concerns among the LGBTQIA+ community. We look forward to continuing with these activities and more in the coming year.
Social Media Roundtable hosted by MP Zoe and Daniel and The Butterfly Foundation
OUR IMPACT
In FY24, EDFA provided services to more than 3,000 carers of those living with an eating disorder. We have helped thousands more since our establishment in 2016.
In FY24, EDFA delivered:
EDFA Executive Director Jane Rowan, Federal Assistant Minister for Mental Health Emma McBride, EDFA Research Committee Chair Professor Genevieve Pepin at the Speaker's Event in Canberra
21 101
Support Groups
EDFA hosted 101 Carer Support Groups, with a total of 633 carers attending support groups.
We have hosted 304 Carer Support Groups since they went online in 2020.
EDucation Webinars
EDFA added 21 EDucation Webinars to its library, which contains more than 160 hours of expert and lived experience educational resources.
EDFA has hosted a total of 91 EDucation Webinars since their inception in 2020.
6
Podcasts
We added six Strong Enough podcasts to our library between November 2023 and June 30, 2024.
1,075 Counselling Sessions
We supported 317 eating disorder carers through a total of 1,075 one-onone counselling sessions with livedexperience counsellors between Oct 10, 2023, and June 30, 2024.
OUR FUNDERS, DONORS, AND SUPPORTERS
EDFA would like to acknowledge the generous contributions received in FY24 from our funders, donors and supporters. Their assistance ensures EDFA can provide life changing and vital services to more carers across Australia.
Government Funders
• Australian Government
Philanthropic Foundations
• Phil Taylor Foundation
• Pressroom Philanthropy
• Jasper Foundation
• Cooper Investors Philanthropy
• Spotlight Foundation Corporate Partners and Sponsors
We are proud to partner with Australian businesses that are passionate about EDFA’s mission. Thank you to our 2024 Recharge 4 Recovery Gold Sponsors BDO and Fred IT. We could not do the work without your support!
Donors
Season One of our StrongEnough podcast series was made possible through the generous fundraising efforts of EDFA members Leah Ward and Alanna McInerney, and the team at Teleflex Medical Australia & New Zealand.
EDFA received several welcomed donations from individual donors in FY24 including:
• The Hunter Williams’ Uphill Fundraiser that resulted in over $12,800 being raised.
• Elise Marcianti’s Moving for the Mind Fundraiser which resulted in $5,000 being raised in December 2023.
• Sallie Egglestone’s perfume campaign that ran in the lead up to Christmas 2023 and resulted in a donation of $1,749 to EDFA.
FINANCIAL SUMMARY
This year, EDFA achieved a 47.7% increase in revenue driven by successful grants and fundraising activities.
These efforts have been critical in providing much needed investment to run and expand our national support groups, carer education sessions and social media support programs.
While our expenses increased by 92% as we scaled up to provide these essential services, we successfully reduced our deficit to $25,154, a significant improvement from last year’s deficit of $48,173.
EDFA's activities continue to be supported by a voluntary Board of Directors and a dedicated team of volunteers, whose significant inkind contribution enables EDFA to maximise our reach and impact across the community.
Operating Expenses (773,678)
SOURCES
1 Australian Government – HealthDirect Australia Limited. (2024). Eating Disorders. Retrieved from: https://www.healthdirect.gov.au/eating-disorders
2 Hay, P., Aouad, P., Le, A., Marks, P., Maloney, D., Touyz, S. & Maguire, S. (2023). Epidemiology of eating disorders: Population, prevalence, disease burden, and quality of life informing public policy in Australia – A rapid review. Journal of Eating Disorders. https://doi.org/10.1186/s40337-023-00738-7
3 Schneider, J., Pegram, G., Gibson, B., Talamonti, D., Tinoco, A., Craddock, N., Matheson, E. & Forshaw, M. (2022). A mixed-studies systematic review of the experiences of body image, disordered eating, and eating disorders during the COVID-19 pandemic. International Journal of Eating Disorders, 56(1), 26-67. https://doi.org/10.1002/eat.23706
4 Wilksch, S.M. Towards a more comprehensive understanding and support of parents with a child experiencing an eating disorder. International Journal of Eating Disorders, 56(7), 1275-1285. https://doi.org/10.1002/eat.23938
5 Mihalopoulos, C., Hay, P., Madden, S., Touyz, S., Wade, T., Squire, S., Wilton, M. & Farrar-Rabbidge, M. (2024). Paying the Price Report, Second Edition. Retrieved from: https://butterfly.org.au/wp-content/uploads/2024/03/ Paying-the-Price_Second-Edition_2024_FINAL_0724.pdf
6 Pehlivan, M.J., Rodgers, B., Schlage, J., Maguire, S. & Miskovic-Wheatley, J. (2024). Characteristics, correlates of burden and support service use of help-seeking carers of loved ones with an eating disorder. European Eating Disorders Review, 32(8), 458-475. https://doi.org/10.1002/erv.3059
7 Queensland Government. (2023). The Health of Queenslanders: Expenditure by Condition. Retrieved from: https://www.choreport.health.qld.gov.au/our-investment/ expenditureby-condition
8 Burt, A., Mannan, H., Toyuz, S. & Hay, P. (2020). Prevalence of DSM-5 diagnostic threshold eating disorders and features amongst Aboriginal and Torres Strait Islander peoples (First Australians). BMC Psychiatry. https://doi.org/10.1186/s12888-020-02852-1
HOW YOU CAN HELP
Volunteer with EDFA
EDFA has a range of volunteer roles. Join our community and utilise your existing skills and knowledge and gain a sense of fulfilment and achievement by supporting eating disorder carers.
Donate to EDFA
As a registered charity, EDFA relies on the generous support of many donors to maintain our services to our carer community.
Every donation - no matter how small - helps! Donate to EDFA today and know that 100% of the amount donated goes directly towards supporting and educating carers and families affected by an eating disorder.
If you live in Queensland, Western Australia and New South Wales, you can choose us as your charity of choice when you recycle your containers through Containers for Change (Qld and WA) or Return and Earn (NSW). You can also encourage those in your networks to also support EDFA when they are returning their containers.
To donate to EDFA Scan the QR code below
Or visit: www.edfa.org.au/get-involved/ donate-to-eating-disordersfamilies-australia/
Corporate Support
Our partners help us provide support, education, and advocacy for carers around Australia. Their assistance ensures we reach more carers and are able to provide life changing and vital services. Thank you to our sponsors. We could not do the work without your support!
If you are interested in Corporate Sponsorship, we would love to talk with you. Contact us today!
