Program: Genetic Epilepsy Family Conference 2022

This is the final program.

Date Time Speaker TITLE
Saturday May 21
11:00am – 11:10am Danielle Williams Welcome and Introduction
11:10am – 11:20am Dr David Cunnington The journey from sick child to having treatments in the clinic
11:20am – 12:40pm Prof Steven Petrou Recent Progress in Precision Therapeutics for Neurodevelopmental Disorders
12:40pm – 12:50pm Montanna Waters Genetic Epilepsy Carer to Researcher
12:50am – 1:30pm Lunch
1:30pm – 1:40pm Steve Hille FOXG1 parent
1:40pm – 2:25pm Deepak Gill Clinical Trials – why are they so important?
Terminology, methods and why you should get involved
2:25pm – 2:45pm Kate Beattie A journey towards precision medicine for genetic epilepsy
2:45pm – 3:00pm Afternoon tea
3:00pm – 3:45pm A Prof Jenny Downs Achieving clinical trial readiness for the measurement of quality of life in DEEs by looking beyond seizures
3:45pm – 3:55pm Steve Trowbridge Running for a cure…a dad’s perspective
3:55pm – 4:45pm Dr Emma Palmer Thinking about new models of care for rare genetic epilepsies: precise and person-centred.
4:45pm – 4:55pm Danielle Williams Summary and meeting close for the day
7:00pm – 9:00pm Dinner – Coogee Bay Hotel
Sunday May 21
9:00am – 9:10am Danielle Williams Welcome and introduction
9:10am – 9:35am Dr Mark Bennett Bioinformatic approaches to reveal causes of genetic epilepsy
9:35am – 9:55am Amy Schneider Co-morbidities in the development and epileptic encephalopathies
9.55 – 11.15am CoGENeS The CoGENeS (Collaboration for Genetic Epilepsy and Neurogenetics Sydney Children’s Hospitals Network) team: walking the road with genetic epilepsy families. Erin Beavis, Eden Robertson and Suzanne Nevin
11.15am – 11.45am Morning Tea
11.45am- 11:55am Ursula Delaney Navigating relationships while parenting a child with a DEE
11:55am – 12:15pm Kris Pierce and Cheryl McCormack Education and Resources, Consumer Engagement and Collaborative research initiatives.
12:15pm – 12.50pm Panel Q & A
12:50pm – 1:00pm Wrap up and conference close

 

Thanks to our sponsors: 

GETA:  GET A Team, GET A Target, GET A Cure