Today is United Nations International Day of Person’s with Disabilities. The campaign in Ireland is being co-ordinated by our colleagues in the Disability Federation of Ireland.
The day aims to recognise those living with disabilities; raise awareness of their conditions; and to highlight the challenges that can face many living with permanent life-long conditions.
The HSE have confirmed that Epidyolex will be reimbursed by the State for patients with Dravet Syndrome, Lennox Gastaut Syndrome and Tuberous Sclerosis (TSC).
Today marks the beginning of Infantile Spasms Awareness Week.
Infantile Spasms are a rare but serious type of seizure that typically occur in infants aged 3-7 months - but can present at any stage during the first 2 years of life. The spasms are quite often subtle and can often be overlooked or misdiagnosed.
However, if Infantile Spasms continue to be overlooked and go untreated, it can lead to permanent damage to a child’s developing brain.
Epilepsy Ireland held our annual raffle on Friday 19th November, and we would like to thank everyone who took the time to enter and help us raise vital funds for our journey towards a society where no person’s life is limited by epilepsy.
Over €14k was raised in support of our work via our raffle – a phenomenal amount during what continues to be difficult times financially for so many.
All our winners have now been notified and they are as follows:
The Minister for Social Protection, Heather Humphreys TD, has committed to meeting Epilepsy Ireland to further discuss our proposals around access to Free Travel Passes for people with epilepsy.
The Minister confirmed her intention to meet with us when being questioned in the Dáil yesterday on the ongoing campaign by Deputies Aindrias Moyihan & Jennifer Carroll MacNeill.
A new study which monitored the outcome and uptake of COVID-19 vaccines in people with epilepsy has recently been published in epilepsy medical journal, Epilepsia.
The study assessed data collected from three medical centres across China from July 24th – August 31st 2021.
Everyone at Epilepsy Ireland is deeply saddened to learn of the passing of Bernard Hughes of Togher, Co. Cork.
Bernard was the face of Epilepsy Ireland (then Brainwave) in Cork for over 30 years. For the people of Cork, before there were Community Resource Officers, there was Bernard.
November marks MyLegacy month and this year the campaign is being fronted by celebrity gardener, Diarmuid Gavin.
The campaign is run by the umbrella group My Legacy, which is made up of 80 Irish charities – including Epilepsy Ireland - working together to raise awareness of the importance of legacy giving and the impact this can have for organisations across the Country.
This week is Charity Trustees Week and is a week in which the work & dedication of voluntary boards of Charities across Ireland is acknowledged and recognised.
We are privileged at Epilepsy Ireland to have a dedicated and hard-working board who are committed to achieving a society where no person’s life is limited by epilepsy.
If you are a person who developed epilepsy in childhood – or are a sibling of a person who developed epilepsy in childhood - a new study being conducted by the PENNI research team wants to hear from you (PENNI - Project on educational and neuropsychological outcomes of children with neurological disorders in Ireland).