SUDEP Action Day 2020 took place on Friday October 23rd. The day aims to raise awareness of Sudden Unexpected Death in Epilepsy and encourages people with epilepsy to know the risks around SUDEP and what they can do to reduce them.
To mark SUDEP Action Day 2020, Epilepsy Ireland are announcing the results of a survey of over 300 people with epilepsy on awareness of sudden unexpected death in epilepsy (SUDEP) among people with epilepsy and about communications between them and their healthcare team about SUDEP.
For #SUDEPActionDay2020, Lucy Dineen shared with us how her family have been impacted by SUDEP....
On May 8th, 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 28th September 2020. In light of ongoing social distancing requirements, the meeting was held via Zoom.