News

For #SUDEPActionDay2020, Lucy Dineen shared with us how her family have been impacted by SUDEP....

On May 8^th, 2015 I lost my beautiful son Robert to Sudden Unexpected Death in Epilepsy (SUDEP). This came as a shock as we had been repeatedly assured that Robert did not have epilepsy and in addition, we had never heard of SUDEP.

The team here at Epilepsy Ireland have been inspired by the efforts of so many over the course of this pandemic and during Rose Week in order to support the work that we do on the behalf of people with epilepsy and their families.

We’ve seen our supporters literally climb mountains, run marathons and as we type this - aim to complete 40,000 push-ups -  in order to raise vital funds for our work.

Epilepsy Ireland has received confirmation that we have been awarded €177,838 under the Government's COVID-19 Stability Fund for Community & Voluntary organisations

The fund was established by the Government in order to provide a once-off cash injection to non-profit and community organisations who continue to provide vital services throughout the pandemic.

Since the COVID-19 pandemic began, Epilepsy Ireland have been continuing our services for people with epilepsy and their families across the country through our team of Community Resource Officers. Like the virus, we have not gone away. However what has gone away is the traditional fundraising income we require for our services - such as church gate collections and events organised by our dedicated members & volunteers.

Epilepsy Ireland have made a submission to the National Centre for Pharmacoeconomics (NCPE) supporting the reimbursement of CBD based medication, Epidyolex, in Ireland. 

The Annual General Meeting of Brainwave The Irish Epilepsy Association (trading as Epilepsy Ireland) took place on 28^th September 2020. In light of ongoing social distancing requirements, the meeting was held via Zoom.

Whilst our dedicated team of Community Resource Officers continue to offer supports for people with epilepsy across the country during this pandemic, they have also been working on developing a new resource for people with epilepsy regarding issues with memory & wellbeing.

In another acknowledgement of the high quality research that is taking place in Ireland, researchers in FutureNeuro and the RCSI – in conjunction with their colleagues in Severo Ochoa-Centre for Molecular Biology and the Institute for Research in Biomedicine (IRB) of Barcelona in Spain– have reported the identification of a new feature of how brain cells behave in people with temporal lobe epilepsy. Their work is published in the journal Brain.

New research from the USA has reported positive findings regarding the use of a Vitamin K based compound in the treatment of drug-resistant epilepsy.

Together with our colleagues in OACS Ireland, Epilepsy Ireland have written again to Minister for Health, Deputy Stephen Donnelly, following up on our request for an urgent meeting to discuss the establishment of an independent inquiry for families impacted by Sodium Valproate (Epilim). Our further correspondence comes nine weeks after our initial correspondence with the Minister on this matter in the wake of the "First Do No Harm" report in the UK.