Federal Minister for Health Greg Hunt Announces $2 Million Dollars of Funding To Find a Cure for Genetic Epilepsy Disorders
bella - March 26th, 2018
On Monday 26 March, Federal Minister for Health Greg Hunt will announce a $2-million-dollar fund to support research into finding a cure for genetic epilepsy disorders. March 26 is Purple Day, a day for raising awareness of the significant impact epilepsy has on the lives of over 250,000 Australians. In particular, this announcement represents an exciting step forward for epilepsy research looking to find a cure for genetic forms of epilepsy.
Danielle and Danny Williams know the devastating impact that epilepsy can have on a family. At 15 months old, their eldest daughter Jaeli started to have eyelid flutters and eye rolls and was diagnosed with epilepsy. Her condition progressed and she began to have ‘drop attack’ seizures multiple times a day. Jaeli tried 15 different anti-convulsants, in the hope that they would help.
The Williams’ second daughter, Dali, hit all of her milestones in her first year of life but when she turned one and began to show subtle eye rolls movements, Danielle and Danny knew exactly what this meant. Both Jaeli and Dali can have multiple seizures per day as well as other symptoms including motor difficulties, impaired speech, difficulty sleeping, and behavioural issues. In February 2016, following whole genome sequencing on the Williams family, doctors were finally able to identify that the girls had a rare mutation in the SYNGAP-1 gene. Jaeli and Dali were among the first in Australia to be diagnosed with the SYNGAP-1 mutation.
Since their daughters’ diagnosis’, Danielle and Danny have campaigned relentlessly for research into SYNGAP-1. In 2017, they reached out to Federal Minister for Health, Greg Hunt.
Danielle, Danny, Jaeli and Dali met with Minister Hunt in his Melbourne offices in September last year and shared their daughters’ long journey to diagnosis and the daily impact of living with their epilepsy. Minister Hunt felt compelled to assist. He has committed to kick-starting the Australian Epilepsy Research Fund, which will have a strong early focus on finding a cure for genetic epilepsies, starting with a SYNGAP-1 research project.
The Australian Epilepsy Research Fund is a national initiative to support research that aims to find a cure for epilepsy, as well as research on how best to support people living with epilepsy in the meantime. In recognition of the significant impact that rare, genetic epilepsies like Jaeli and Dali’s can have on families, the very first grant from the Australian Epilepsy Research Fund will go towards SYNGAP-1 research, being conducted by a dedicated team of researchers from the Florey Institute of Neuroscience and Mental Health. Australia is currently one of the global leaders in the field of epilepsy research and we look forward to more exciting and ground breaking research in this area over the coming years.
CEO of the Epilepsy Foundation, Graeme Shears today commented, “This is an amazing start for the Australian Epilepsy Research Fund. We call on the community to help grow this research fund in order to provide $1,000,000 per year for epilepsy research. The Minister’s generous contribution will assist us in building awareness of epilepsy, supporting research into curing epilepsy and reducing the impact on people’s lives. Because we believe that no one with epilepsy should go it alone.”
The Epilepsy Foundation is one of Australia’s leading bodies in epilepsy engagement and awareness. To find out more about the Epilepsy Foundation please visit http://epilepsyfoundation.org.au/ or follow the Epilepsy Foundation on social media at www.facebook.com/epilepsyfoundation