Syngap Research Fund Australia is run by parents of Australian Syngapians. We are involved with the broader Syngap community through the Syngap Global Network as well as local Genetic Epilepsy groups through the Genetic Epilepsy Team Australia (GETA).

Danny and Danielle Williams established Syngap Research Fund Australia in 2016 after receiving the Syngap diagnosis for their two daughters, Jaeli and Dali. The Williams family live in Melbourne. Kelda and Joshua Ind joined the team in 2018 when their daughter Hannah was diagnosed. They live in Port Fairy, Victoria and meet up with the Williams family as often as they can.

The mission of Syngap Research Fund is to support individuals and families affected by Syngap. We do this through creating and distributing educational materials about Syngap; holding an annual conference to update families about the latest research; fundraising efforts that support scientific research into treatments and/or a cure for Syngap; and hosting as many family get togethers as possible.

We are motivated by the belief that our children’s seizures, pain, frustrations, inability to talk or focus can be fixed. Our children are still too far from the fulfilling existence we believe they could have. We are buoyed by the progress precision medicine has made with conditions like Cystic fibrosis and SMA. The rate of advancement in medical research over the last 10 years is astounding. 10 years ago there were only a handful of epilepsies with a known genetic explanation, now there are over 80.

As of 2022, there are 33 Australian Syngapians with two largest groups of patients in Victoria and Queensland. Check out where we are using the interactive Syngap map under the ‘What is Syngap’ page.