Resources: Genetic Epilepsy Family Conferences

Here are links to the recorded lectures from previous conferences:

Invited Lectures

Professor Daniel Lowenstein: Living with Epilepsy: Finding the Balance Between Reality and Hope

Professor Ingrid Scheffer: Natural History Studies of the Developmental and Epileptic Encephalopathies: The What, Why and How

Assoc Prof Annapurna Poduri: Individualised Treatments for Epilepsy – Following the Genes

Professor Steven Petrou: The Importance of Disease Mechanism in Therapy: Lessons from SCN1A

Dr Emma Palmer: Making Sense of Rare Genetic Diagnoses: Working with Families to Inform and Support

Dr Katherine Howell: Genetic Diagnosis: Will it Change my Child’s Current Treatment?

Sara James and Panel: Panel discussion with all the speakers

5 Minutes With

Danny Williams: A Dad’s Perspective

Kelly Clohessy: The Impact on Siblings

Dr Nelson Olivier: Praxis Precision Medicines’ Vision for Rare Genetic Epilepsies

Sarah Crawford: Life as a Parent of a Child with Refractory Epilepsy, Surivial Tips for the Chaotic Life

Dannielle Goodwin: A Dravet Patient’s Perspective

Heather Renton: Syndromes Without a Name (SWAN)

Invited Lectures

Assoc Prof Annapurna Poduri: Precision Medicine for Genetic Epilepsy – Small Steps Toward a Big Vision

Professor Ingrid Scheffer: New Discoveries in Epilepsy Genetics Transform Clinical Care

Dr Snezana Maljevic: Brain in a Dish: Modelling Epileptic Encephalopathy Using Human Stem Cells

Professor Gavin Rumbaugh: Development of Targeted Therapies for Genetically-Defined Neurodevelopmental Disorders

Professor Steven Petrou: Therapeutic Approaches in Neurogenetic Disease

Professor Glenn King: How Can Venomous Animals Help us Understand and Treat Genetic Epilepsies?

Sara James and Panel: Panel discussion with all the speakers

5 Minutes With

Scotty Sims: Secretary and Co-Founder KDNQ2 Cure Alliance

Claire Audibert-Legué: KCNQ2 Parent

Monica Weldon: President and Founder Bridge the Gap

Kimberly Hoffman: Dravet Sibling

Will Pierce: SCN2a Champion

2017 Conference Audio Recordings

Panel Discussion: Communication and Behaviour

Dr Giselle Withers: Mindfulness Meditation Exercise

Laura Green: Disability Funding – Navigating Systems

Panel Discussion: Expand Your Horizons

Cathy Love: Becoming Chief

Genetic Epilepsy Team Australia - GETA

10 hours ago

RESEARCH OPPORTUNITY:
GETA families are invited to participate in the research.
--------------------------------------------------------
Lifestyle program for the families of children with genetic epilepsy.

Researchers at The University of New South Wales are seeking volunteer research participants to join an online 4 week intervention to learn about the effects of increased physical activity on wellbeing, particularly in relation to mental health.

Would the research study be a good fit for me?
The study might be a good fit for you if:
-You are the parent or primary carer of a child with genetic epilepsy
AND

What would happen if I took part in the research study?
If you decide to take part you would:
-Answer some questionnaires before and after the trial.
-These will ask about your mental health, physical activity levels and quality of life
-Agree to the researchers having access to your fitness data
-Join a private Facebook group specifically initiated for this study group
-Commit to participating in the intervention for a 4-week period with a 1 month follow up.
-Listen to/read the content provided by the exercise physiologist
-Participate in a weekly group video call if you choose
--Be encouraged to provide input to the Facebook group

Who do I contact if I want to take part in the study or want more information?
Name: Grace McKeon
Contact: Email: [email protected]

Please note: This is a pilot study and only accept a limited number of participants will be accepted at this time. The study will be closed once the number of participants has been reached. ...

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Genetic Epilepsy Team Australia - GETA

6 days ago

Please donate if you can.

The Pip.ilepsy FoundationA donation as small as $10 can gift a newly diagnosed child one of these little friends to have by their side.

Sharing the message of hope that a cure for epilepsy will one day be found.

To make a TAX -DEDUCTABLE donation DONATE through our homepage.

We couldn’t do this without you!..

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.
.Do you know of a newly diagnosed epilepsy warrior that may need a little hope from our unicorn? If so tag them in this post as them to like, share and follow our page....don’t forget to email us with their details and we will be sure to get one of these little guys out to them in the mail 💌🦄
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#ibelieveinunicorns #unicornscureepilepsy
#epilepsy #epilepsyawareness #epilepsywarrior #epilepsyfighter #eofy #taxdeduction #thankyou ...

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Resources: Genetic Epilepsy Family Conferences

2019 Conference Videos

Invited Lectures

5 Minutes With

2018 Conference Videos

Invited Lectures

5 Minutes With

2017 Conference Audio Recordings