The history of Eating Disorders Families Australia
Eating Disorders Families Australia (EDFA) history has emerged from a group of parents who have and are caring for young people with an eating disorder. They shared a common experience of caring for a child desperately in need of treatment and care, while engaging with systems that were not clear on the role of parents and carers, how to support the parents and carers and in some cases, not particularly welcoming of parent and carer involvement in treatment. The currency of provider practice with evidence based treatment was varied, with some providers being up to date and others, using practice proven to be low in effectiveness.
Parents with a shared eating disorder caring experience
These parents had a shared experience of the loneliness and doubt of having to do much of the caring with little or no support from the system or those around them. They received no guidance on where or how to find that support. In searching for this support, some of these parents also had in common the discovery of F.E.A.S.T and the Around the Dinner Table forum. They shared the incredible sense of relief and support that came from knowing that in fact they were not alone. Others had gone before them and some were still around to offer support, albeit on-line.
The original desire of this group of parents was to have F.E.A.S.T establish an Australian presence. An organisation here in Australia that brought an Australian context to the F.E.A.S.T offering and met the needs of Australian families and carers. F.E.A.S.T was approached with this concept and while supportive of the goal, explained that their mandate did not enable the development of such organisations. The parents then determined that the only way they could enable the support for families that they had longed for in their own respective journeys, was to create such an organisation themselves.
Parents collaborating, creating and celebrating a common goal
In March 2016, these parents started to meet regularly to progress the creation of such an organisation. A major challenge was the geographic spread of the parents. Four parents were in Victoria and one was in Perth. With the addition of another parent it became two in Perth. Meetings were held by phone.
In July 2016, the parents celebrated the registration of Eating Disorders Families Australia (EDFA) as an Australian Public Company Limited by Guarantee. This was followed by registration with the Australian Charities and Not-for-profits Commission (ACNC), the Australian Tax Office and the attainment of the Deductable Gift Registration.
With these organisational enablers in place, now there was the basis from which the needs of families and carers could be promoted, enabled and if necessary, provided for.
This original group of parents became the inaugural Board of EDFA. The Board recognised there was a long journey ahead. If they were to make a sustainably positive impact on the lives of people they were seeking to help, the Board recognised the need to build off the foundations of a solid organisation. To that end, the Board put its efforts into establishing a sound governance base and strategic approach for the work that lay ahead. In October 2016 the EDFA Board met over a weekend in Victoria and developed the basis of the strategic plan that is here on the website. The governance framework has been developed in parallel with the strategy.
Eating Disorders Families Australia is launched
From the strategy work, the Board determined that a website dedicated to families and carers in Australia was going to have the most immediate and positive impact. Our first goal of delivering support to Australian families and carers has been to establish this website, in time for the launch of EDFA, at the At Home with Eating Disorders conference in Sydney in May 2017.
EDFA has appreciated the moral support of organisations along its short history. F.E.A.S.T, Butterfly Foundation, CEED, EDANZ, Bridges Eating Disorders Association of WA, for which we thank them.
We thank you for your support as we pursue our vision of, “An Australia where eating disorders struggle to emerge, thrive or persist.”
Watch this video to understand why an organisation like ours is needed