Submitted by Carol Ireland
What would the world be like without ‘hope’? I cannot imagine and I’m sure you couldn’t either. I want to share with you our latest fundraising campaign and the hope that research can bring to many families living with epilepsy. Epilepsy Action is dedicated to supporting innovative research that significantly impacts the diagnosis and treatment of epilepsy. Can you help us take action to transform lives and bring a little hope by supporting these vital research programs?
‘Hope’ – such a simple word. But a potent one for those with epilepsy, and their families.
Most people with epilepsy dare to hope for a future where seizures are well controlled, and ultimately a cure for epilepsy exists.
Research is the way we transform hope into reality. It is the key to a world where children no longer suffer 20 or more seizures every day; where pregnant woman don’t fear for their baby’s safety; and where someone will not die suddenly, leaving a devastated family behind.
Epilepsy remains one of the most underfunded and misunderstood conditions in Australia. And we need your help to change that dire situation.
Keeping Mums and Babies Safe
We are the partner and major supporter of The Australian Pregnancy Register (APR) – research that has been responsible for important findings that have changed prescribing practices and led to fewer birth defects in babies of women who have epilepsy.
Like any expectant Mum, Natalie is excited about the future, but having epilepsy means keeping her baby boy safe is more complicated than usual.
Research from The Australian Pregnancy Register (APR) has linked certain antiepileptic drugs (AEDs) to birth defects, so it was important that Natalie change her medication as soon as she decided to start a family.
Natalie is grateful that this research has helped ensure the health and normal development of her son. She has volunteered to be part of the APR study throughout her pregnancy and for a year after the birth.
Families Devastated by Sudden Deaths
Tina watched her 10-year-old son Damian die in front of her – suddenly and without a reason. One minute he was dancing in front of the TV, the next he told his Mum he was scared, and then he was gone.
Four years later, Tina and her family still struggle with the loss of their happy and affectionate son and remain frustrated that they still don’t really understand why he died.
SUDEP (Sudden Unexpected Death in Epilepsy) is when a person with epilepsy dies suddenly and prematurely and no reason for death is found. Researchers are investigating a range of possibilities such as the effect of seizures on breathing and the heart.
Epilepsy Action has joined forces with leading international organisation SUDEP Action (UK) to increase awareness, and to drive increased research into the causes and prevention of SUDEP in Australia.
Pioneering Research into Promising Treatments
Four years ago, 13-year-old Ava was experiencing up to 30 seizures every day and didn’t sleep more than three hours at a time.
Following two failed brain surgeries and having already tried the anti-epileptic medications available, her exhausted parents tried Ava on a few drops of medicinal cannabis oil.
Her Mum Joelle says that within two weeks her seizures stopped completely. Today Ava experiences on average only two or three small seizures a week and can do more than her parents ever dreamed she could.
There are a number of positive stories of children like Ava who have been helped by medicinal cannabis, but much more work is needed to ensure that effective and safe treatments can be available for the future.
Epilepsy Action is heavily involved in advocating for more research and development of effective medicinal cannabis products and has collaborated with the University of Sydney in the PELICAN project (Paediatric Epilepsy Lambert Initiative Cannabinoid ANalysis). This work has the potential to uncover new and more effective medications for the treatment of childhood epilepsy.
Help Us Improve Lives
Please take action today and make a tax-deductible donation so that we can further support and fund research and medical trials that will make the future so much brighter for those with epilepsy.
With many thanks in advance,
You can read more about the stories of Natalie, Damian and Ava in our Taking Action newsletter.