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Being a supporter of Epilepsy Action Australia, I know you are well aware of the impact epilepsy can have on a person’s life and your previous generosity has helped us continue our work. That’s why I am writing today with news I think will concern you greatly.
In March, Epilepsy Action Australia conducted new research into national levels of awareness and understanding of epilepsy. Alarmingly our survey revealed that it remains largely ‘forgotten’ by Australians – in spite of the fact that more than half know someone with epilepsy.
Not only will epilepsy affect some half a million Australians in their lifetime, it is one of the oldest conditions known to man, having been recorded in a Babylonian medical textbook in 2000BC and examined by Hippocrates in 400BC.
Yet so many centuries later, most Australians admit having limited understanding of epilepsy. For instance, 72% stereotype epilepsy as convulsive seizures. Few realise there are less obvious signs. This was the experience for Amy and her family.
At first Amy’s parents Cathie and Paul just thought she was a dreamy six-year-old. She’d stop mid-sentence, suddenly unsure of what she was saying, or absent-mindedly break off during tasks like putting on her shoes and have to be reminded what she was doing. But soon frustration and confusion began boiling over at school and home.
“It was just unbearable. We would completely lose patience with her,” says Cathie, who now hates thinking of the heartache this reaction must have caused her little daughter. “Tears would be rolling down her face. She’d say, ‘But mummy, I forgot!’ ” After a distressing year searching for answers and ruling out possibilities like autism and hearing problems, Amy’s parents booked her in for an EEG. It showed “picture-perfect” signs of epilepsy.
Amy was having up to 60 ‘absence seizures’ a day – brief but disorienting episodes when she lost awareness of her surroundings and couldn’t see, hear, or remember what she’d just been doing. “When the paediatrician told me, I cried,” says Cathie. “He said ‘is this good or bad?’ and I said, ‘It’s brilliant. Now at least I know what I’m dealing with.’ To me, information is control.”
So Cathie was hopeful when a family member gave her our Epilepsy360˚ magazine and she read about home-visits by our Nurse Educators. Cathie called us, and our local Nurse Educator, Tina, visited the family then gave an epilepsy presentation to Amy’s teachers. Also “She did a Seizure Management Plan,” adds Cathie. “There’s a copy in the office, the sick-bay, the library. If Amy goes for a sleepover we send a laminated card with her.”
Amy has suffered dramatic side-effects from her medication including severe depression and mood swings last Christmas. “Tina at the end of the phone was what kept us going,” says Cathie. Meanwhile receiving simple explanations for her epilepsy has helped Amy “gain confidence that she knows what’s going on. It’s not going to crumple her in a heap.’ ” Losing track from seizures in class means Amy’s learning is around two years behind. But with her mum’s help, she has written a beautiful poem Cathie says, “We’re very proud of it. We sent it to all the family. It still brings a tear.”
Your previous support for Epilepsy Action Australia has made a positive difference to so many. We know you will share our deep concern that epilepsy is still Australia’s ‘forgotten condition’ – and extremely low on the list of national priorities for awareness and attention.
Please remember us again so we can assist those like little Amy and her family who are craving support and reassurance. With need for our services always rising, your support is increasingly vital to ensure we can help every family who turns to us. Today is the perfect time to contribute to Epilepsy Action Australia, as gifts sent by 30 June can be claimed in this year’s tax return. I urge you to give generously and thank you for your compassionate commitment to our work.
Yours sincerely
Carol Ireland
Chief Executive Officer
Click here to read the full report Epilepsy: The Forgotten Condition
Donation
It is estimated that around 500,000 people in Australia will be diagnosed with epilepsy at some stage in life. As the national service provider of epilepsy education and support services, meeting their needs is our primary aim.
Epilepsy Action Australia heavily relies on the generous support of our community to maintain our services for people living with epilepsy, with only a small proportion of our income coming from government.
A diagnosis of epilepsy is often challenging, as the condition can seriously affect every aspect of a person’s life - from their work, education, and relationships, to their physical and mental health.
Epilepsy Action Australia’s services include individual programs, community and professional education, information, referral and consultancyand are designed to optimise life outcomes for people with epilepsy.
Donations of $2 or more are tax deductible. Click here to make a donation today and help make a positive difference in the lives of children and adults impacted by epilepsy.
Share in the achievements of children like Amy – and in their futures – by making a donation today.
Monthly Donation
An easy and convenient way of donating to Epilepsy Action Australia is by becoming an Action Partner and making regular monthly donations.
How our Action Partner program works?
- Your nominated donation amount is automatically deducted from your credit card/ bank account each month.
- Your regular support enables Epilepsy Action Australia to plan all our projects with greater confidence and accuracy.
- We keep you informed on how we’re spending your donation and the difference it is making.
- We send you an annual statement that you can use to help with your tax return, as all donations are tax deductible.
This reliable regular source of income enables Epilepsy Action Australia to make a positive difference in the lives of children and adults affected by epilepsy.
Here are some of the ways your monthly gift could help:
- $25 - Comprehensive information packs helping parents understand their child’s condition
- $50 - Telephone support, advice and guidance
- $100 - Community education session teaching people how to help someone having a seizure
Becoming an Action Partner is quick and easy. Click here to become an Action Partner today.
Epilepsy Action Australia helps thousands of families live confidently despite epilepsy. But they can only meet this urgent need thanks to the generosity of people who care. As Taneisha’s mum, I’m writing to ask that you become an Action Partner today.
My daughter Taneisha has epilepsy. She started having seizures when she was just four weeks old. I would run into her room when I heard her having a seizure but she'd still end up with marks all over her body from banging into the sides of her cot. She now averages around three to four seizures a week - often they occur back to back all through the night.
Before contacting Epilepsy Action Australia, I used to panic and felt overwhelmed. I didn’t know how to deal with it. The information, services and support I’ve received from Epilepsy Action Australia has had such a positive impact in my life.
I often phone to ask questions about Taneisha’s condition with one of their Epilepsy Specialists and always feel more at ease after our conversation.
Epilepsy Action Australia also provided a seizure first aid and epilepsy awareness session at Taneisha’s school. I now feel confident that her teachers are able to deal with her seizures and keep my little girl safe.
Please help families face life with epilepsy by clicking here and becoming an Action Partner today.
