For more than seventy years Epilepsy Action Australia has been at the forefront of advocating and funding research into interventions and treatments to help improve and save lives for people impacted by epilepsy.
Research helps us advance knowledge, improve health, and enhance quality of life. Epilepsy Action Australia supports research that leads to better understanding, diagnosis, and management of epilepsy. Only by acting today can we make a significant difference to the lives of children and adults with epilepsy, now and for future generations.
We can’t do this without your support. Your donation today will enable us to invest funds and time in ground-breaking research efforts that will directly translate into a positive change for people living with epilepsy and their families.
Priorities for epilepsy research include better understanding of seizure types and syndromes, leading to better treatment for seizure control. This research is critical for children like little Asher.
In June 2021, Asher, dropped to the floor with his first seizure. It was terrible for his Mum to witness this and not understand what was happening. Asher was taken to hospital and after numerous tonic clonic (convulsive) seizures and testing over following weeks, Asher was diagnosed with a rare type of epilepsy
“Epileptic Encephalopathy Continuous Spike and Wave During Sleep” (CSWS).
This means Asher has constant seizure activity while sleeping at night. His family had no idea, even though this may have been happening during the night for quite some time. From age 3, Asher had experienced ‘absence seizures’ on and off, however the family were told he may grow out of these. Asher’s “sleep seizures” are not yet fully under control with medication, and there is hope that he will not decline further in coming years.
Supporting epilepsy research is critical for developing best practices in medical care, but also contributes to achieving improvement in behavioural, academic, and social functioning outcomes. Asher’s type of epilepsy causes damage to his brain which is evident in his cognitive ability and areas such as social skills and some motor skills. Asher absolutely loves school and whilst he is around 2 years behind peers, he is progressing with the wonderful support he receives.
Epilepsy Action Australia has committed to many research initiatives for the current year, with more in the pipeline. Our current work includes collaborations with tertiary hospitals and universities such as Monash, Melbourne, Queensland, and Sydney Universities, assisting in recruitment and often acting as a Community Partner or Associate Investigators.
The projects are broad and varied, ranging from: investigating novel treatments for children with devastating forms of epilepsy; the potential of cannabinoid-based medicines; through to better treatments and services for women during and after pregnancy.
These projects help many people with epilepsy, including women like Polly Smith. Polly’s journey with epilepsy began at 10 months old, but when she was having babies of her own, epilepsy made pregnancy challenging. Having to increase her medication, Polly worried it could harm her unborn children. But her experiences will now help others because she decided to register with the Australian Pregnancy Registry, after finding out about this research from Epilepsy Action Australia.
“They wanted volunteers to provide information on medication effects on both yourself and your foetus, when pregnant and in the future too. I did this not only for our benefit but to help other people. It certainly wasn’t easy having epilepsy and being pregnant, but I now have a 10-year-old and twin 8-year-olds. We love them to bits!”
We know from research that women who take anti-epileptic medication to help control seizures are at higher risk than the general population of adverse pregnancy outcomes such as stillbirths or severe foetal malformations. We are the major funder of the Australian Pregnancy Register. This independent research project aims to:
- better understand and identify which medications and other factors increase the risk of a women with epilepsy having a baby with a birth defect or other adverse outcome,
- facilitate improvements in clinical care, and
- contribute to knowledge and understanding of links between pregnancy and epilepsy.
Our involvement in research is limited by the donations we receive. We ensure research programs we support impact people with epilepsy across various life stages and demographics. Research is central to creating a future where epilepsy can be effectively treated, unavoidable deaths are eliminated, and cure is possible.
Can you help us transform lives and bring hope by supporting these vital research programs? Your donation will also help us translate research into action. If, like us, you want to do even more, you could consider a recurring monthly gift by joining our Research Advocates program. Together, we can change the future for people with epilepsy.
Yours sincerely,
Carol Ireland
CEO & Managing Director
P.S. Medical research offers the best opportunity to learn, transform and improve the lives of Australians affected by Epilepsy. Please get behind our vital appeal today.
