Hi to all our EDFA members
My name is David Quilty. I live in Canberra and have been an EDFA Director since 2019. Our daughter has an eating disorder and like so many of you, EDFA has been incredibly helpful and supportive of our family. I really encourage you to make use of EDFA’s support and resources.
The EDFA team is making it easier to access a strive Carer Support Group on days and at times that suit the varying needs of families and carers. The Education team continues to offer a very strong program of fortnightly online presentations from eating disorder experts from around the world. These sessions are recorded so you can watch them later.
Many members tell us about the support they receive through the strive Australia Facebook community. We have also been updating the EDFA website so you can more easily access the information and resources you need to support your loved one.
Stay safe,
David
News and Collaborations
EDFA celebrated International Women’s Day by publishing an article on Breaking the Bias in Eating Disorder Recovery. Our volunteer shares her lived experience on recovering from an eating disorder, while dealing with the associated internalised bias, and bias within the healthcare system:
“Despite depictions in the media of eating disorder patients as emaciated, most people who struggle with an eating disorder are not underweight. This form of bias is a serious barrier to recovery, as some people dealing with an eating disorder are denied treatment based on weight and other physical determinants alone.”
Breaking the bias in eating disorders is a long and complex process, starting with the pressing need to advocate for government reform.
Advocacy Campaign
EDFA members know first-hand the many service gaps and failings in the health system that prevent our loved ones from getting the treatment they need and deserve.
The run up to the Federal election is the time to demand real action from our local Federal MPs to provide better support for people with eating disorders and their families and carers.
To help, we’ve prepared a range of materials to support your local advocacy with your Federal MP. With EDFA members from all over Australia, it is time to find our collective voice and demand real action on eating disorders from our local Federal MPs. Read More
Farewell and thank you to our Founding Board Director, Violeta Bozinovski
EDFA Board, volunteers and members would like to sincerely thank our founding Director, Violeta Bozinovski, who retired as an EDFA Board Member in December 2021.
Through her personal experience of caring for a child with an eating disorder, Violeta was surprised at the lack of support, assistance and information for Australian families caring for loved ones with eating disorders. After connecting with other passionate parents going through similar experiences, Violeta was instrumental in starting up a monthly Melbourne Eating Disorder Parent Support Group and became a co-founder of EDFA in 2016, to ensure families across Australia had access to lived experience support, understanding and education.
Violeta was a dynamic force within our team and helped in so many areas, including organising the Inaugural Pass the Baton Ball in 2018, which was a sell-out event at Melbourne Town Hall and brought Clinicians, Researchers, Dignitaries, people with eating disorders and their families, as well as friends and the general public together for a great cause.
Violeta has held many ‘hats’ as a volunteer with EDFA, including advocacy, stakeholder relationships, marketing, fundraising, research, IT support, and education.
Words of gratitude cannot fully acknowledge the enormous contribution Violeta has made within our organisation nor speak of her tireless work for families and caregivers in the eating disorder community.
We wish Violeta all the best in her professional endeavours and thank her for her dedication to improving support for families impacted by eating disorders.
strive Carer Support Program
Changes to our Support Groups
From 1st April, all our Carer Support Groups are open to all members, regardless of where you live! Check out the new calendar for dates and times.
This change will provide more choice and flexibility for carers, and greater support and connection with our national community. It will also provide more opportunity for small breakout groups to chat with others going through similar experiences.
We’re also creating a new daytime Coffee and Catchup group which will be a more informal way to connect and support each other. our first event will be on Wednesday 27 April 2:30-3:30pm AEST.
Our monthly strive ARFID group will be held on the 2nd Thursday each month from 8-9:30pm, and quarterly strive4men, strive Bulimia Nervosa and strive Binge Eating Disorder groups will continue on the 3rd Wednesday each month from 8-9:30pm.
We encourage anyone who has not yet come along to a support group to “give it a go” as connecting with others who understand what you’re going through can be enormously helpful. For information on all the different support groups and the monthly calendar of events, please subscribe to our online calendar.
Our long-anticipated online library of strive monthly Topic Sheets is now live. Members now have access to both current and previous Topic Sheets, so if you can’t make it to a session, or need a refresher, download the Topic Sheet!
Changes to our strive Facebook Group
Over the last quarter, we have been working hard to ensure our strive Facebook groups provide a supportive community for our members and a safe, confidential space to share information and learn from others.
As social media practices evolve, we have had to adapt to ensure our group members can continue to share the amazing support, encouragement and optimism we see on the page every day.
Our first change was modifying the way members can post on our Facebook groups. Our moderators must now approve all posts before they are published, ensuring all posts reflect the groups values and provide a safe space for everyone. This has been well-received by our members, who continue to share their experiences and receive encouraging responses.
We have also recently updated our Facebook group rules based on feedback from our members, to further enhance our members’ confidentiality and ability to share information in a private, safe online space.
If you haven’t joined our private Facebook group, join strive Australia here! Please be sure to answer all three admin questions in order to be accepted.
EDucation Webinars
EDFA’s twice-monthly national online education webinars continue to be well attended and received by our parent/caregiver community.
We have worked hard to secure a fabulous range of presenters and topics for our members for 2022. Check out our education line-up here.
Our library of webinar recordings is steadily growing and we currently have 40 education sessions covering a wide range of topics presented by professionals and lived experience speakers.
Don’t forget to visit this in-house resource for the opportunity to learn, learn, learn!
We are committed to bringing you the latest about all things eating disorders, both nationally and internationally, and we pride ourselves on being able to provide our community with this growing library of valuable information.
Our webinars over the last quarter have been outstanding and we are grateful to the presenters shown here generously shared their professional, clinical and lived experience expertise.
All the webinars were recorded and are accessible in the member area of the website. Catch up with your headphones whilst walking, travelling etc and listen to this invaluable wealth of information, which could just change your world!
Over the next quarter we are delighted to offer our members the following webinars:
- 21 April – Overview about the treatment options available for eating disorders, presented by Carmel Fleming
- 5 May – The latest in eating disorder research for individuals and caregivers, presented by Professor Tracey Wade
- 19 May – Lived experience Story of Hope session, presented by Elise Marcianti.
- 2 June – A showcase of the important work of NEDC, InsideOut and CEED and an overview of eating disorder resources, research and education. A great opportunity for parents and carers to up-skill themselves on all facets of an eating disorder to assist them to be more effective carers in supporting their own loved ones.
- 16 June – Parenting and Setting Boundaries around an Eating Disorder, presented by Maria Ganci.
Full details of the above and all EDFA’s upcoming education webinars can be accessed here.
Sibling Support Group
This year our online Siblings Support Group has changed from the second Thursday in the month to the second Tuesday in the month.
We warmly welcome our two new facilitators, Natalie Kuchenmeister and Robyn Gorfine, who have joined our three adult sibling facilitators, Georgia Harrold, Julia Wastell and Olivia Larkin.
Siblings Support Group is a valuable support network for those who need it. Siblings from age 10 to adult are welcome to join the group and are allocated into age-appropriate breakout groups. Each session includes an introductory topic of discussion, including support around skills and strategies. Some groups will be ‘special events’ such as art, music, drumming therapy etc. All groups are advertised within the strive Australia Facebook forum and via member mailout.
To find out how to join the Siblings Support Group, please visit our website, and look for upcoming sessions via our What’s On Calendar.
Research Round Up
The EDFA Research Committee has recently launched a new project to gain a better understanding of people’s experiences with the strive Carer Support Groups and other EDFA resources. We hope that by evaluating the program and obtaining feedback on people’s personal experience of and satisfaction with the groups, that we will be able to continue improving the program. We also hope that the research findings will help us identify areas that carers require further support. Please follow this link to complete the survey.
TBT-S
The next webinar on TBT-S will be in May (date TBC), with Stephanie Knatz-Peck presenting on the topic of TBT-S for Child and Adolescent with FBT as the backbone.
For children and adolescents, TBT-S can be used to complement traditional Family Based Treatment approaches (FBT). TBT-S for children and adolescents focuses on using interactive and experiential exercises to educate family members on known brain alterations that lead to anorexia to build empathy and understanding. Additionally, TBT-S delivers parent-driven skills that are addressing these brain disturbances and are catered towards the unique temperament and personality profile that often accompanies anorexia nervosa. This webinar will provide an overview of TBT-S for children and adolescents, and review associated parenting and psychoeducational tools.
EDFA is pleased to be credited in supporting the creation of the latest TBT-S book ‘Temperament Based Therapy with Support for Anorexia Nervosa’ here for our work in helping organise training for Australian clinicians.
Share your story
We have 3 copies left of Hugh van Cuylenburg’s awesome book “Let Go” to give away!
Be the first of 3 caregivers to share your story of hope about caring for your loved one with an eating disorder, which will be published on our website, and we will send you a copy, compliments of EDFA’s Ambassador, Hugh van Cuylenburg.
Be quick! Submit your story here!
Best Wishes,
The EDFA team
Become a member of EDFA for $25 per year (Australian Carers Only)
EDFA is a proud not-for-profit, predominantly volunteer-run organisation.
We invite you to be part of a revolutionary peer support group making positive changes in the eating disorder space. Strength in numbers means we are able to affect change and have the collective voice of the carers recognised.
We provide opportunities to connect with other parents and carers who share your experiences, helping you to feel less alone and isolated.
Yearly membership is just $25.
Membership gives access to:
A range of resources in our Member Only section of the website including Educational Recordings, Member Recommended Clinicians and Services, and more.
Over 70 support groups and education sessions per year. including:
Twice monthly education sessions
strive Carer Support Groups for carers of loved ones with any type of eating disorder (run three times each month)
strive ARFID Carer Support Group (run monthly)
strive bulimia nervosa Carer Support Group (run quarterly)
strive binge eating disorder Carer Support Group (run quarterly)
strive4Men Carer Support Group (run quarterly) – a group for male carers
siblings Support Group (run monthly) – a group for siblings of those with an eating disorder
daily online support through our private strive Australia Facebook Group and the opportunity to connect, share, learn and ask questions is another benefit of being part of our EDFA community.
discounts to eating disorder events and conferences
Your membership helps EDFA with ongoing costs of running a not-for-profit organisation, and importantly, shows Government that families value, need and believe in this type of lived experience support. Strength in numbers helps EDFA lobby as the collective voice of carers for better services, treatments, access to expert clinicians and specialised eating disorder units, to help our loved ones in their recovery journey and to acknowledge the impact of an eating disorder diagnosis on the entire family unit.
