As 2019 draws to a close, it allows for a period of reflection on the work of our organisation over the past 12 months. We are immensely proud to have been a continuous pillar of support to people with epilepsy and their families over the year and we look forward to continuing our work in 2020.
Epilepsy Ireland would like to congratulate our colleagues in FutureNeuro after it was confirmed that €3.9mill has been awarded for their Blockchain & AI-Enabled Stratified Trial System (BESTS) project.
Funding was granted under the Disruptive Technology Innovation Fund (DTIF) which is run by the Department of Business, Enterprise and Innovation.
At the December meeting of the Board of Epilepsy Ireland, Cathy Grieve was elected as the new Chairperson of our charity.
Cathy has lived with epilepsy since her diagnosis in 2008 and was originally appointed to the Board in 2014. She has a background in media and journalism and spent 19 years with the BBC. Cathy originally became involved with Epilepsy Ireland through our awareness raising and advocacy work and she has been Secretary of the Board since 2016.
New data regarding the use of Epidyolex (Cannabiniol) in the treatment of the rare condition tuberous sclerosis complex (TSC) has pointed to the use of the product having a positive impact in seizure frequency for the patients included in the trial.
The findings of the study were presented recently at the annual meeting of the American Epilepsy Society.
A new study involving Epilepsy Ireland service users and members which looked at the attitudes of people with epilepsy in Ireland to integrated person centred care (IPCC) has been published in the latest edition of the medical journal, Epilepsy & Behaviour.
The National Institute for Health and Care Excellence in the UK (NICE) has recommended the CBD-based medication Epidyolex for use on the NHS in the UK in Lennox-Gastaut syndrome and Dravet syndrome, two rare, severe forms of epilepsy. Epidyolex received marketing approval for use in the EU in September.
A new gene therapy treatment for temporal lobe epilepsy (TLE) could be developed according to new research by a German/ Austrian team.
An emerging study has established the structure of a protein in our cells which could help improve epilepsy treatments in the future.
Researchers in the United States working out of the UT Southwestern Medical Center used advanced microscope technology in order to establish the structure of Potassium Chloride Cotransporter 1 (KCC1).
A new study published recently in the journal, Epilepsy & Behaviour, has pointed to the use of the medication brivaracetam (Briviact) as a potential adjunctive treatment for those with drug –resistant epilepsy who cannot tolerate the drug levetiracetam (Keppra).
In the week where Epilepsy Ireland officially announced the opening of our 7th research funding call, we are delighted to see another global acknowledgement of research we have funded.