News

Alongside our colleagues in OACS Ireland, we have written to the Minister for Health regarding the lack of progress on the key issues which we have been campaigning on in relation to Sodium Valproate (Epilim).

In our correspondence to the Minister, we have identified three issues which must be urgently addressed and which require a renewed focus on by the Minister & his Department officials. These are as follows:

In memory of their late colleague Louise Young, our corporate partners in Procurement Leaders will this weekend take part in the inaugural #LousRelay.

Louise Young was a young Wexford woman who sadly passed away at the beginning of this year. She was a person with epilepsy and a dedicated media & fundraising volunteer for Epilepsy Ireland.

Our Community Resource Officers Agnes Mooney, Edel Killarney & Mary Baker are planning on organising an online STEPS programme for parents of children with epilepsy over the coming weeks. 

To mark World Brain Day today, our colleagues in the Neurological Alliance of Ireland (NAI) have launched a report on online service provision since COVID-19.

The report is entitled "Looking Beyond COVID-19: Embracing Digital Solutions for Neurological Care" and documents how neurological services - in terms of both healthcare professionals and patient organisations has adapted since the onset of the pandemic. 

It certainly appears that Summer is here which is great to see after what has been a difficult first half of the year for so many. However, with Met Éireann issuing a yellow warning for high temperatures for the rest of the week, we wanted to remind people with epilepsy and their families of a few tips to bear in mind during this period of wonderful weather. Extremes of heat can trigger seizures in for some people with epilepsy so these bear these tips in mind while enjoying the sunshine!

In the Dáil last week, Deputy Marian Harkin raised the ongoing delays surrounding details of the promised inquiry into the historical licensing and prescribing of Sodium Valproate (Epilim) in Ireland. 

The Minister for Health, Deputy Stephen Donnelly confirmed in November 2020 that such an inquiry would be established after years of campaigning by OACS Ireland and Epilepsy Ireland. Unfortunately, there has been little detail ever since on the proposed inquiry.

Epilepsy Ireland is embarking on an exciting new process to develop our Strategic Plan for the next 5 years – and we need your help!

2021 marks the final year of our current Strategic Plan which was launched in 2017.

In the Dáil last week, Deputy Rose Conway-Walsh raised the ongoing delays surrounding details of the promised inquiry into the historical licensing and prescribing of Sodium Valproate (Epilim) in Ireland. 

The Minister for Health, Deputy Stephen Donnelly confirmed in November 2020 that such an inquiry would be established after years of campaigning by OACS Ireland and Epilepsy Ireland. Unfortunately, there has been little detail ever since on the proposed inquiry.

With the Dublin Bay South bye-election officially set for July 8^th, Epilepsy Ireland have contacted the candidates from each of the main political parties asking that they outline their support for addressing a number of key issues that are impacting on people with epilepsy within the constituency and indeed, across the country.

We recently highlighted these issues with all TDs and Senators as part of our recent National Epilepsy Week campaign.

A new study recently published in leading epilepsy medical journal, Epilepsia, has reported positive findings on the long-term efficacy of CBD in refractory epilepsies.

The study investigated the use of CBD-based medication Epidyolex in 54 patients with refractory epilepsy in a US hospital over a period of up to 5 years.