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Australia is the global leader in the field of genetic epilepsy discovery. Australian researchers were the first in the world to show that epilepsy can be caused by genetic factors – whether through random mutations or inherited characteristics. In fact, until the ground-breaking work of Victorians Prof. Sam Berkovic and Prof. Ingrid Scheffer last decade, it was widely believed that epilepsy could not be caused by genetic factors. Since then, Australian researchers have discovered the bulk of the 100+ (so far) genetic causes of epilepsy.

As well as being leaders in the field of discovery, Australian researchers are also at the forefront of the search for treatments and cures for genetic epilepsy, with ground breaking work underway at places such as the Florey Institute in Melbourne.

Genetic epilepsies often have devastating effects on the quality of life – and even the length of life – for those born with them. Particular genetic mutations are, by their nature, often random and frequently rare. As a result, some genetic epilepsies occur in very small numbers in a population as relatively small as Australia’s. However, there are many thousands of Australians who have some form of genetic epilepsy.

Attend the Genetic Epilepsy Family Conference in Melbourne on Saturday May 26th 2018 to learn more on the latest research in genetic epilepsy and workshops for parents and carers to help manage children and adolescents with genetic epilepsy. Click here for more information on the conference.

Join us to help researchers find a cure for genetic epilepsy. You can link in with us via our Facebook page or contact us via email.

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

Conference 2018

Genetic Epilepsy Team Australia’s 2018 Family Conference

GETA 2018 Family Conference Attendees

The 2018 Family Conference on Genetic Epilepsy was a great success with over 100 delegates from all around Australia, representing families with a range of genetic epilepsies. Delegates heard about the latest in genetic epilepsy from world-renowned clinicians and researchers and had the opportunity to meet with other families affected by genetic epilepsy.

If you’re looking for videos of the conference, check out full replays of all the lectures at the conference resource page.

Videos of individual lectures can also be found by clicking each speaker’s name in the program below for via the speakers’ page.

Thanks to our wonderful speakers and to everyone who participated in the conference. We look forward to working together with you to help find a cure for genetic epilepsies.

When & Where:

Conference: Saturday 26th May 9:00 – 5:00 at Forum Theatre (Room 153), Arts West, University of Melbourne, Parkville, Melbourne.

Directions to the Forum Theatre from Royal Parade are here. Alternatively you could use Google Maps.

Parking is available for $8 at University of Melbourne’s Royal Parade Car Park

Conference DinnerFriday 25th May, 6:30pm for 7:00pm at Angliss Restaurant, 550 Little Lonsdale Street, Melbourne. Thanks to Medibank, conference attendees can attend the dinner on Friday night for no additional cost (drinks at bar prices).

Lab Tour: Friday 25th May. Small group tours of the Florey laboratories.

Melbourne MuseumFor families attending the conference, there will be free tickets available to visit the Melbourne Museum from Thursday 24th May to Sunday 27th May. Enter Melbourne Museum directly through the Members Entry point (located near the shop to the right inside the entrance) to avoid having to line up at the Ticketing Desk. Let museum staff know that you’re with the Genetic Epilepsy Conference to get free entrance.

Accomodation for the conference at a discounted rate of $165 (Workspace Parkview King room with Internet) is available at The Larwill Studio hotel. To get the special rate, call the hotel directly (03 9032 9111) and quote ‘Genetic Epilepsy Team Australia’.

Program:

9:00am – 9:45am Professor Annapurna Poduri Precision Medicine for Genetic Epilepsy – Small Steps Toward a Big Vision
9:45am – 9:50am Scotty Sims – Secretary and Co-Founder KCNQ2 Cure Alliance
9:50am – 10:35am Professor Ingrid Scheffer New Discoveries in Epilepsy Genetics Transform Clinical Care
10-:35 – 10:40am Claire Audibert-Legué – KCNQ2 Parent
10:40am – 11:00am Morning tea
11:00am – 11:45am Dr Snezana Maljevic Brain in a Dish: Modelling Epileptic Encephalopathy Using Human Stem Cells
11:45am – 11:50am Monica Weldon – President and Founder Bridge the Gap
11:50am – 12:35pm Professor Gavin Rumbaugh Development of Targeted Therapies for Genetically-Defined Neurodevelopmental Disorders
12:35pm – 1:30pm Lunch and group photo
1:30pm – 2:15pm Professor Steve Petrou Therapeutic Approaches in Neurogenetic Disease
2:15pm – 2:20pm Kimberly Hoffman – Dravet Sibling
2:20pm – 3:05pm Professor Glenn King How Can Venomous Animals Help us Understand and Treat Genetic Epilepsies?
3:05pm – 3:30pm Afternoon tea
3:30pm – 3:35pm Will Pierce – SCN2a Champion
3:35pm – 4:30pm Panel Discussion Sara James leads the panel of Professors

Download the conference program booklet here.

Conference Speakers:

Professor Annapurna Poduri – Associate Professor of Neurology, Harvard Medical School, Associate in Neurology Epilepsy Genetic Program, Boston Children’s Hospital

Precision Medicine for Genetic Epilepsy – Small Steps Toward a Big Vision. As the keynote speaker, Anna will review a modern vision of precision medicine for epilepsy. After a brief review of epilepsy genetics, she will discuss a framework for precision medicine in epilepsy that thrives on partnerships among physicians, researchers, and parent-led organizations. Some of the key issues to consider include identifying clinical endpoints, the choice of models in the laboratory setting, and the clinical systems in which we will try to implement novel, precision therapies. The talk will attempt to combine aspirational and practical issues, challenging the status quo but also being realistic about what we still need to accomplish to work toward precision medicine.

Professor Ingrid Scheffer – Professor of Paediatric Neurology, The University of Melbourne and Florey Institute, Austin Health, and The Royal Children’s Hospital, Melbourne

New discoveries in epilepsy genetics transform clinical care. In the last year, there have been seminal discoveries in our understanding of the genetics of the epilepsies. Ingrid will discuss what we mean by developmental and epileptic encephalopathies and why finding the cause is essential for the development of precision therapies. New genetic discoveries will be presented including the issue of mosaicism that is critical for families who would like more children and the steps that need to be taken so that families can make more informed decisions. She will also talk about new insights into hidden mutations in what used to be called ‘rubbish’ DNA, which we now know holds promising answers to the cause of specific forms of epilepsy. These exciting times in the genetics of epilepsy mean that the field is fast-paced and scientific discoveries are changing the way we approach these disorders.

Professor Steve Petrou – Deputy director of the Florey Institute, Head of the division of epilepsy and lead of Therapeutic Innovation Australia.

Therapeutic Approaches in Neurogenetic Disease. Knowledge of the genetic underpinnings of a disease provides opportunities to develop therapies that precisely target disease mechanisms. The talk will introduce three major modalities that can be used to deliver on the promise of “precision medicine”. In particular the promise of RNA based therapies that can precisely address many of the common genetic disease mechanisms. 

Dr Snezana Maljevic – Senior Research Fellow, Epilepsy, The Florey Institute

Brain in a Dish: Modelling Epileptic Encephalopathy Using Human Stem Cells. This talk will provide insights into the rationale, methodology and use of induced pluripotent stem cells to study epilepsy and develop new treatments. This exciting technology has emerged in the recent years as one of the most promising tool in disease research and we will look into the opportunities and challenges specific to the modelling of epileptic encephalopathies. 

Assoc Professor Gavin Rumbaugh – Associate Professor, Department of Neuroscience, Scripps Lab, Florida

Development of Targeted Therapies for Genetically-Defined Neurodevelopmental Disorders. Rare genetic variants are known to cause epilepsy and related neurodevelopmental disorders. When the causal link is a single gene, it is possible to create highly specialized experimental systems for the purpose of producing tailored-made therapies for a given patient group. My talk will provide an overview of our efforts to create cutting-edge infrastructure and model systems that enable the identification and validation of drug-like compounds that target a genetically-defined neurodevelopmental disorder with epilepsy.

Professor Glenn King – Professional Research Fellow, Institute for Molecular Science, University of Queensland

How Can Venomous Animals Help us Understand and Treat Genetic Epilepsies? Many epilepsies arise from genetic mutations in ion channels. Venoms are the best natural source of ion channel modulators and therefore they provide unique tools to help us understand and treat genetic epilepsies.

 

Any questions? Email us at: conference@geneticepilepsyteam.com.au or contact us via Facebook.

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

The Genetic Epilepsy Conference 2018 was Supported by:

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About

Genetic Epilepsy Team Australia (GETA) is a group of parents whose children have rare genetic epilepsy. Our children have different kinds of epilepsy, but there’s so much we share.

That’s why we’ve teamed up with world leaders in the field of genetic epilepsy. Our goal is to support the ground-breaking research that happens right here in Australia and New Zealand — from stem cells to mouse models to biotech and beyond.

We want to make life better for people living with rare epilepsy.  We want our kids to have better treatments, as soon as possible. We want them to have a better quality of life right now.

Genetic Epilepsy Team Australia’s mission is to help world-leading Australian researchers cure genetic epilepsy. As part of this mission Genetic Epilepsy Team Australia aims to:

  • Raise awareness of the many forms of genetic epilepsy
  • Promote Australia’s world-leading research position in the discovery and treatment of genetic epilepsy
  • Raise funds for research into cures and therapies for genetic epilepsy through the foundation of a precision medicine centre in Melbourne

Genetic Epilepsy Team Australia works alongside leading health researchers and with families and children with genetic epilepsy towards their mission of establishing a precision medicine centre in Melbourne to develop treatments for genetic epilepsy.

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

Contact

Join us to help promote world-leading Australian researchers develop a precision medicine facility in Melbourne, to develop treatments and find a cure for genetic epilepsy.

 

Link in with us via our Facebook page or contact us via email.

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