Epilepsy Action Australia’s mission is to “deliver innovative services that increase understanding, raise awareness, develop skills and leverage research to enhance the lives of those living with the condition.”
Sydney mother Marie Trusler originally founded the Epileptic Welfare Association in 1952.
When Marie needed to have her own health issues treated, she had no choice but to place her young daughter – who had severe epilepsy – in a psychiatric hospital. The time spent in the hospital irreversibly impacted the nine year old girl and Marie vowed “that no-one else should suffer in this way.”
Gathering around 30 parents and other like minded people, the support network formed and from there has grown into Epilepsy Action Australia, helping thousands of individuals and families around the country.
The not for profit is celebrating its 70th year in 2022, and we spoke with Carol Ireland, CEO, about the organisation, what they hope for in coming years and their strong relationship with True Accounting.
Range of services
Epilepsy Action Australia (EAA) provides a wide range of services to the community. From direct support, to education and partnerships in clinical and social research, the organisation is deeply committed to improving the lives of people with the neurological disorder. Carol explains:
“We have a team of specialist epilepsy nurses who provide direct support for people with epilepsy. They are a highly skilled team who have extensive experience with both children and adults.
A lot of what they do is health education… such as seizure first aid, how to administer emergency medication in the case of a life threatening seizure.
But they can also help a child who might be having problems at school or even a person who is having issues in their workplace. The service also includes a lot of advice or support.
Our education services are delivered both through face to face education and online courses. Again, our specialist nurses deliver the education and this is typically into schools or disability organisations. We teach about different kinds of seizures, how to manage them and how best to support them.
And with our key research projects, we have a range of partners that we work closely with. These include Macquarie University, UNSW, Monash in Melbourne. Our aim is to work with these research organisations to achieve better treatments for people with epilepsy.”
All not for profits face challenges and EAA is no different, but Carol believes they manage to really punch above their weight.
“For a small organisation, we have a broad range of activities… and we support people Australia wide. We pride ourselves on the fact that no matter where someone lives, we can deliver services and support to assist them.
And we really do it on the smell of an oily rag! We have a limited amount of Government funding that is attached to a couple of specific services. We actually raise most of our revenue ourselves, which is probably our biggest challenge. Year after year, we have to make sure that we have enough to not only deliver what we deliver now, but we also want to innovate so that we are always on top of whatever the latest need may be.
Technology is a big part of that… it’s a new world we live in now; so much more is hosted in the virtual space. We used to have nurses out in the field all around the country, but these days we use technology… we have virtual meetings with our clients, we deliver education online, all these things rely on technology that can definitely be costly!
We are lucky to have some very loyal donors, but fundraising is hard work. We are always developing our campaigns and trying to stay across the latest ways you can raise funds and communicate with donors. We try to find smart technological solutions that don’t exhaust our financial resources.
One of the services that we operate is the National Epilepsy Line. It currently has three years’ Government funding, but after that time it needs to be sustainable. We want to be able to guarantee that when someone calls the line there is a nurse available for them to talk to… they answer questions from people with epilepsy, parents of children with epilepsy, community members or even GPs. A nurse at the end of the phone… it sounds easy, but there’s a lot of work involved.”
Celebrating 70 years
With 2022 being the 70 year anniversary, EAA has set out an aspirations document that contains a list of all the new goals they want to achieve over the next three years.
“We have so many projects we want to roll out from working with very young children to preventing avoidable deaths in epilepsy. And if we are able to raise an additional $700,000 each year for the next three years, we would be able to do all the things that we want to do!
So we are launching our campaign over the whole year. We are looking at partnerships with trust foundations, major donors and the wider community.
Around Purple Day – 26 March – we ask people to host their own purple function… it could be a picnic or work lunch, maybe you could dye your hair purple, whatever it is, we love any community fundraising.
We will also be operating a digital campaign that is set to launch in the week of Purple Day. Our main aim here is to raise awareness for epilepsy, because we still think it’s often a misunderstood condition.”
Working with True Accounting
EAA and True Accounting started working together when the not for profit went through a significant change in structure.
“We used to operate a 30 seat telemarketing call centre. We had around 100 casual staff selling raffle tickets or requesting donations, but when our strategy moved away from that type of work, we also changed our financial model.
This meant a general downsizing of the organisation and it made sense to have an outsourced finance team. We were able to gain vast accounting expertise and skill that was unachievable with a small in-house team.
The beauty of working with True Accounting is their general knowledge of the not for profit sector. It is so useful to us as an individual client… if we hear of something, or see something and we think ‘I wonder what that means, what is it about?’ – True Accounting would always be our first point of call.”