Genetic Epilepsy Team Australia | Community organisation

Genetic Epilepsy Team Australia

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23.01.2022 GETA Team.. Want to walk for epilepsy. Set up your own page and get walking for epilepsy...

22.01.2022 A new edition of Rare Revolution Magazine specifically on rare epilepsies. A great read and relevant to many of our families.

21.01.2022 An alert regarding Lamictal.

21.01.2022 This week, the Australia Epilepsy Project (AEP) was hoping to share the result of the Medical Research Future Fund (MRFF) Stage 2 Grant. Unfortunately, the deci...sion has been delayed until early November. This project will help people who have epilepsy gain better control of their seizures, by giving them access to advanced imaging, cognition and genetics testing. The hope is to develop a deeper understanding of epilepsy and how to treat it. This delay in the funding announcement means that people can’t be referred into the project yet and will result in more uncertainty for people How can you help? Talk about this project with your neurologist, GP, friends and family. If you’d like to hear more about this project, sign up to AEP’s newsletter at https://epilepsyproject.org.au/support/

21.01.2022 SUDEP presentation tonight.

20.01.2022 Rare Epilepsies you can sign up for the Rare Voices Australia newsletter.

20.01.2022 From May 1, Australians living with a rare form of epilepsy will have access to a medicinal cannabis medicine, which is being listed on Australia’s Pharmaceutical Benefits Scheme (PBS) for the first time. This is great for the Dravet community however we need to encourage pharmaceutical companies to do bucket studies across a wider range of presentations.. Advocate across genes!!

20.01.2022 An inspiring talk about how one family’s search for a cure for their baby girl’s rare and severe form of #epilepsy https://florey.edu.au/about/news-media/calm-after-the-storm

19.01.2022 For our Dravet families

18.01.2022 Hi All, Last minute request... I am on a call with NDIS and Rare Voices. Any feedback, requests or questions? Kris

17.01.2022 Wishes For Elliott raising awareness for SCN8A

16.01.2022 Four-year-old Abi Chatterton lives with a painful condition that causes her to have up to 200 seizures a day, but a new medicine is transforming her life. #9News | Nightly at 6.00pm

16.01.2022 Callum in brother to Lucas who has KCNQ2.. He is selling Christmas cards and part of the profits go to KCNQ2 Cure Alliance

14.01.2022 If you have a minute (approx 15) to complete. It is important to have representation of complex epilepsy syndromes in order to highlight the gaps.

13.01.2022 It has been a tough year for all our GETA families - COVID-19 has added a extra layer of complexity to our caring roles. Carers are the backbone of our society. Please consider pledging your support for the magnificent carers in our community. Carers Victoria

13.01.2022 CHILDHOOD EPILEPSY SERIES Please find attached a copy of the flyer for an upcoming Childhood Specialist Series presented by Professor Ingrid Scheffer and Dr Silvana Micallef. This is a free online event - Sunday 8th November 2020 Registration details are on the attached flyer.... Once registered, further information including the session login details, will be provided via email in the week prior to the event. If you have any further queries, please don’t hesitate to contact Epilepsy Foundation of Australia

12.01.2022 Another interesting webinar by DEE Connections

12.01.2022 INPUT REQUIRED.. The CoGENES group (Collaboration on Genetic Epilepsy and Neurogenetics) https://wch.med.unsw.edu.au/genetic-epilepsy-collaboration have recently developed 6 short (4 minute) video modules with the aim of providing additional support to parents of children who have a suspected or confirmed genetic epilepsy. The videos have been co-developed in consultation with parents, using interviews and feedback from our parent reference group. We invite you to complete a ...brief survey to provide feedback on the video resources. Your responses to the survey will be helpful, because they will enable us to ensure that the videos are acceptable for parents and families who have a young child with a genetic epilepsy. The survey will take approximately 10 minutes to complete. Participation in the survey is voluntary and your decision to participate in the survey will not affect the care of your child in any way. If you decide to participate in the survey, your responses to the survey will be anonymous. The videos and survey can be accessed via this link: https://unsw.au1.qualtrics.com/jfe/form/SV_cDaViYwpPezeM8m If you have further questions, please feel free to contact Suzanne Nevin either via email or telephone using the contact information details listed below.

10.01.2022 Some good news for Dravet Syndrome

09.01.2022 SCN8A Awareness Day

09.01.2022 If any Victorian groups are part of GSNV please come and join us!

07.01.2022 We are so excited. Only one week to go! Registration closes Sept. 22nd. Register today @ www.lgsfoundation.org/conference2020

07.01.2022 November is National Epilepsy Awareness month. The Rare Epilepsy Network (REN) works to amplify the voice of rare epilepsies. GETA is a proud member of REN. #NEAM2020 #epilepsy #rare #rareepilepsynetwork #GETA

07.01.2022 It is that time of the year again!! Faces of GETA 2021 conference. If you are happy for your child to be a face of GETA 2021 please email a photo to [email protected] GETA CONFERENCE DETAILS : MAY 29th, 2021 10am to 4pm @ The Florey Institute ... Drinks/Social hour at Naughton's Hotel, Parkville 4.30pm - 6.30pm We hope to have the event open on the 11th of April for bookings - you will be able to attend face to face or virtually.

07.01.2022 Dravet Syndrome UK Watch a recording of this webinar (from 24th September 2020) with Dr Andreas Brunklaus, Paediatric Neurologist at the Royal Children's Hospital in Glasgow, and member of the DSUK Medical Advisory Board. Dr Brunklaus is one the UK’s leading experts in the genetics of Dravet

06.01.2022 A webinar in SUDEP - this will be recorded so you can watch at a time suitable for you.

04.01.2022 Make sure you attend and hear about SYNGAP1 from one of our founders Danielle Williams and Prof Steve Petrou from The Florey Institute of Neuroscience and Mental Health Syngap research ------------------------------------------------------------------... Will you be attending our virtual dinner next week? We’re going to celebrate the year that was, and talk about a rare genetic condition called SYNGAP1. You’ll hear from Danielle Williams, mum to two girls who live with SYNGAP1. Danielle will tell her daughter’s stories, who were two of the first people in Australia to be diagnosed with this rare genetic condition. Professor Steven Petrou, Director of the Florey and an expert in his field of rare epileptic encephalopathies, will present his latest research on SYNGAP1. We hope to see you there - register here: https://epilepsyfoundation.org.au//virtual-event-year-in-/

03.01.2022 Registrations are open. Please follow the link and register!!

03.01.2022 Who is getting PURPLE this month?

02.01.2022 Encoded Therapeutics have reached out to GETA to start conversations around their therapeutic pipeline for Dravet Syndrome/SCN1A. To this end we are sharing a NHS study which is being conducted here via Prof. Ingrid Scheffer in Melbourne for Encoded Therapeutics in preparation for clinical trials in the Dravet Community. Encoded therapeutics have released a new animation video they developed to help describe how Gene Regulation Therapy works and its potential to treat Drave...t Syndrome. This video can be found here: https://vimeo.com/530502964/7085c3cd2f #SCN1A #dravet #endocdedthertap

01.01.2022 A upcoming webinar on SUDEP