Welcome from Lisa
Hi to all our EDFA members
I am Lisa Pendlebury and I joined EDFA as the Treasurer in March 2022. However, my story with EDFA began 12 months prior to this, as I was looking for alternate treatment options for my 16-year-old daughter who was not improving under Family Based Therapy and had required medical stabilisation in hospital.
While FBT can be effective at nourishing a child, in our case it did not address the underlying mental health issues that lead to the development of the eating disorder (ED). This system of care treated my daughter as an object with no voice. In hindsight, I wished her mental health was addressed up front by the mental health team and I was given more support and education including EDFA as a resource at the point of diagnosis.
I am forever grateful for the education support that EDFA provided me which definitely helped drive my daughter’s recovery.
I look forward to a future where:
- governments and medical institutions can invest in clinical trials to find more efficacious treatments for eating disorders
- we can have better treatment outcomes that consider the whole person and the carer
- we can have better medical monitoring that is real time
- the stigma associated with EDs doesn’t exist
- schools can support children with eating disorders through supervision of eating, counselling support and providing better education of EDs
- someone with an ED gets the same quality of government, family and community support that someone who is affected by cancer gets
While an ED can seem so challenging when you are in the middle of it, the other side of an ED can be so rewarding. I believe my daughter and I are better people for this life challenge we faced together.
My advice to anyone struggling and in the trenches is to keep searching for a healthcare professional that can connect with your child and keep trying different treatment options. It could be a GP, a psychologist, a counsellor, an ED coach that finally has a positive impact. I believe recovery from an ED takes a team of people including family, friends, schools, healthcare professionals and government funding to ensure the right services are available to all.
EDFA thanks the many donors for supporting EDFA during the past year. It is because of their generosity that we are able to support, educate and empower carers and families impacted by an eating disorder. Below are some of the major donors and foundations who supported EDFA this year:
- Jasper Foundation
- Pressroom Partners
- Nelson Alexander
- Teleflex
- McNamara Foundation
- Fred IT Group
- Lindisfarne Donation
- Conroy Family
- Abi Andrew
Stay safe,
Lisa Pendlebury
News and Collaborations
It’s been a busy quarter at EDFA, with a strong focus on eating disorder advocacy!
Ahead of the Federal election, EDFA ran a campaign advocating to local Federal MPs about the need for increased funding and support for people with eating disorders, and their families. We prepared a range of materials for members to help them share their personal story, and outlined the comprehensive approach that is needed to improve treatment and support throughout Australia. Our members shared their stories, campaigned for change and many also met with their local Federal MP!
With the election of a new government and many new Federal MP’s, our continued advocacy is crucial. We have the opportunity to influence the new federal budget and we need you to contact your local Federal MP to let them know that significant, immediate funding is needed to support the millions of Australians impacted by eating disorders. Look out for our updated tools and templates to assist you in this process.
EDFA participated in World Eating Disorders Day on 2 June by inviting our members to ‘Pass the Baton’. It’s really important that someone with an eating disorder feels supported by a team that shares information with each member of the team, and that they’re all on the same page. The baton represents having a whole team around you.
They treat the person with kindness and compassion, helping them feel safe. We really want parents/carers/trusted supports to be included in these treatment teams. It’s very important that they are part of the planning because they’re the ones that are doing the hard work at home to support their loved ones.
The idea of the baton is that you’re sharing information, you’re passing it along, and you’re staying on track. We know that this is not a sprint, it’s a marathon.
EDFA also participated in Men’s Health Week (13–19 June), an opportunity to highlight the importance of men’s health, and to promote and support the health and wellbeing of men and boys in our communities.
EDFA celebrated Men’s Health Week by sharing our members’ reflections on being a male carer. “I created a brand for myself called Better Me Industries with my motto reading …. “A Better Me Makes for a Better We”. I now have more time to invest in family, volunteering, networking, socialising, holidaying, renovating, exercising and much more.”
We encourage all carers to look after their own mental health and take some time to recharge at an EDFA event. Look out for upcoming events here!
strive Carer Support Program
From 1st April, our online Carer Support Groups have become National, and open to all our members regardless of where they live. It’s been wonderful to see carers from all over Australia coming together to share experiences and support each other.
Feedback has been positive about the increased choice and flexibility and having the opportunity to attend multiple groups each month. We love connecting members of our strive Australia community!
View our calendar for upcoming support groups here.
Carers have enjoyed meeting each other at our new monthly daytime Coffee Catchup group, as it’s a lovely relaxed way to connect and support each other. Join our next Coffee catch up on Wednesday 20th July.
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. Remember you are not alone!
Our online library of strive monthly Topic Sheets is available for members. If you can’t make it to a support group, or need a refresher, download the Topic Sheet!
Our strive Australia Facebook group continues to grow with new carers joining every month. Our aim is to provide a safe, confidential and supportive space for carers to share information, experiences, and learn from each other.
It’s great to see the increasing engagement in the group, with more supportive posts and comments each day. Please reach out on the page with questions, ideas, to share something positive or because you need a place to vent with people who understand. You’ll always find someone from our amazing and caring strive community will respond.
If you haven’t joined our private Facebook group, join strive Australia here! Please be sure to provide your email address and answer the three membership questions in order to be accepted.
EDucation Webinars
This quarter we have had the privilege to hear from national and international professionals in the field of eating disorders.
Thank you to presenters who recently spoke to the latest research in brain stimulation for eating disorders; an overview of eating disorder treatments; decreasing the risk for eating disorders; a comprehensive overview of eating disorder resources in Australia; and the benefits of recovery coaching for eating disorders.
A special thank you to Elise Marcianti, podcast host of ‘Explore Your Core’, who spoke about her journey of recovering from an eating disorder, gifting families valuable insight into what it’s really like from the inside of an eating disorder.
One of the highlights of attending EDFA’s live education webinars is the unique opportunity to ask questions of all our speakers, many of whom have spent years, and sometimes decades, gaining expertise and wisdom in the field of eating disorders. We are grateful to each and every one of them for generously sharing their time and knowledge with our community. Our presenters often tell us that they feel honoured to be asked to present their work to families and caregivers and enjoy gaining an understanding of families’ lived experience challenges during the Q&A sessions.
We have a fast-growing comprehensive library of webinar recordings in the member area of our website which is a valuable resource for all families navigating the complexities of eating disorder caregiving and parenting. As a member, you can dip into this bounty of information on a wide range of topics here, at any time.
Full details of all EDFA’s upcoming education webinars can be accessed here but here’s a quick overview of what’s coming up:
- Saturday 9th July – “Answers to Anorexia – Malnourished Minds”, by Dr James Greenblatt (USA). A global webinar for parents, carers and professionals. Free for EDFA members.
- Thursday 21st July – Nutritional Management for Eating Disorders, by Fiona Willer APD & Prof Leonie Calloway
- Thursday 4th August – The mind/body connection (interoception) in eating disorder recovery, by Jasmin Watson OT
- Thursday 18th August – The benefits of art therapy for eating disorders, mental health and trauma, by Bindi Blacher, Art Therapist
- Thursday 1st September – Staying Connected When Emotions Run High, by Dr Annmaree Bickerton and Toni Garretty
- Thursday 15th September –– Managing Orthorexia and ARFID, by Dr Sarah McMahon, Psychologist
Sibling Support Group
Siblings Support Group is a safe space to connect with other siblings who are experiencing similar journeys and we encourage you to explore this valuable offering if it feels right for your loved one. The group is for siblings aged 10 to adult, and is allocated into age-appropriate breakout groups. Each session includes an introductory topic of discussion, including support around skills and strategies, and some groups will be ‘special events’.
Sadly, in June, we said goodbye to our wonderful facilitator, Georgia, who has been a treasured Siblings Support Group facilitator since the group began in March 2021. We will miss Georgia so very much and thank her from the bottom of our hearts for her support, friendship, compassion and dedication to our siblings, facilitators and EDFA.
We are thrilled to welcome our new facilitator, Benita Bruce, who will co-lead the adult group. Benita is a sibling of a sister with an eating disorder who is in recovery and brings with her many years of lived experience as a support person and sibling, as well as her professional background working with young people in her role as the Victorian Student Representative Council. We know that Benita will be a strong mentor for the siblings in our group, bringing invaluable support and wisdom.
To find out how to join Siblings Support Group, please visit our website here and look for upcoming sessions via our What’s On Calendar:
strive Survey – your help needed by June 30 please!
We’d love your input into what we do well, and how we can improve the support we provide to families and carers.
You can access the survey here.
Your feedback also helps us advocate for greater investment for eating disorders. If you participate in the survey, you will have the chance to win one out of six $50 Coles/Myer gift card in the study’s lottery.
Participants in an optional focus group will be reimbursed with a $30 Coles/Myer gift card.
EDFA Board
We would like to thank retiring Board Director, Joni Thomes from NSW, for her passion and contributions to EDFA. Joni’s knowledge around communications and media has been invaluable, and her kindness and friendliness has endeared her to us all. Her generosity in sharing her wealth of knowledge and experience has been appreciated by the Board and the broader EDFA team. We wish Joni all the best for her future endeavours and appreciate the time she has given to supporting EDFA.
We would like to welcome two new members to the EDFA Board.
Jennifer Paterson brings her lived experience of caring for her daughter who has recovered from anorexia, and is passionate about making a difference in the community and supporting others. Jennifer brings extensive experience working in not-for-profit organisations, along with a professional background in public health and IT.
Fiona Mitchell brings her lived experience of caring for her daughter in recovery from anorexia, and has a background in the pharmaceutical and health sector. Fiona’s expertise in managing stakeholders and partnerships across industry and government will be hugely beneficial to EDFA.
We are excited to have Board representation in both Queensland and Western Australia, and Jennifer and Fiona will work together to expand our grant and fundraising initiatives, and campaign for greater recognition of EDFA’s offerings and the need for more and better services and support for people with eating disorders and their families who are also impacted.
Research Round-up
The EDFA Research Committee launched a new project in early 2022 to gain a better understanding of people’s experiences with the strive carer support groups.
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.
The survey is still open so if you haven’t already taken part, we would appreciate your participation. For more information and to participate, please click here.
TBT-S News
The May webinar by Stephanie presented on the topic of “TBT-S for Child and Adolescent with FBT as the backbone” was well attended, with many new members who had not previously attended a session on TBT-S.
The upcoming ANZAED conference for clinicians in August will be attended by Laura Hill, Carmel Flemming (QuEDS) and Jasmin Watson (CEED). They will be presenting a 90-minute workshop of TBT-S, and promoting the joint collaboration between the TBT-S team and EDFA. Keep an eye out for the workshop!
Best Wishes,
The EDFA team
Become a Member for just $25 per year!
| Features | Non-Member $0 | Member $25p/yr |
|---|---|---|
| 24/7 Daily Support Forum | ||
| National Carer Support Groups for carers of loved ones with any eating disorder | ||
| Special Carer | ||
| Support Groups (run quarterly) | ||
| Siblings Support Group | ||
| Access to Member Only Content | ||
| Twice Monthly Education Sessions with experts from the eating disorder field and those with lived experience | ||
| Access to Digital Library - Webinar recordings (over 120 hours) | ||
| Member Recommendations - GP's, Psychologists, Psychiatrists, Dietitians, Peer Mentors, Recovery Coaches and More. Updated monthly. | ||
| Information Packs | ||
| strive Monthly topic sheets and talking points | ||
| Downloadable EDucational Resources | ||
| Discounts to events and conferences | ||
| A voice of change in the ED space |
