Our Network
We respect, learn from and collaborate with the following groups and organisations that work with Syngap and/or other rare diseases. Please click on their logo to learn more.
Australia
The Genetic Epilepsy Team Australia GETA
Co-founded by Syngap parents Danielle and Danny Williams with amazing parents of other rare genetic epilepsies. GETA’s mission is to: Get A Team, Get A Target, Get A Cure. The GETA team run annual conferences in May to educate and inspire genetic epilepsy families about precision medicine and the latest progress towards a cure for genetic epilepsies. Conferences are held in Melbourne and live streamed around the world.
The Epilepsy Foundation (EF)
EF is the auspice partner for Syngap Research Fund Australia. To establish a charity in Australia requires significant effort and cost, and we are grateful to the Epilepsy Foundation for partnering with us. EF are incredibly supportive of the Australian Syngap and GETA groups. In 2019, EF established the Epilepsy Research Fund to manage significant investments from the Australian Federal government. Syngap, Professor Petrou and Professor Scheffer have been successful recipients of grants through this Epilepsy Research Fund.
Professor Ingrid Scheffer
Professor Scheffer is a hero to many Australian and International Syngap families. She is a world renowned research clinician, and also a tireless advocate for those who suffer from epileptic encephalopathies. We are privileged she is involved in Syngap and to learn from her.
Professor Ingrid Scheffer works at the Austin Hospital and the Melbourne Brain Centre and has led the largest Syngap study and is one of the leading Syngap clinicians in the world.
The Florey Institute of Neuroscience and Mental Health
At the forefront of developing treatments and cures for many diseases, including Syngap. In December 2018, a team at the Florey commenced a research project in Syngap. Led by Professor Steve Petrou, the team are developing an ASO with an objective of curing Syngap. Watch this space!
International
Syngap Global Network (SGN) is comprised of Syngap representatives from more than 10 countries. We share knowledge, content, awareness campaigns, research plans and hope. We regularly support each other and collaborate to help improve the lives of syngapiens all over the world. The group manages the Syngap global Family Support Facebook group, the Syngap census, the Syngap map and efforts for the Syngap awareness day on June 21, Splash4syngap.
Syngap Global Network
United States of America
Austria
France and Canada
Germany
Switzerland