The New Year will see the continuation of the Patients Deserve Better campaign.
The campaign was launched in 2021 and is being coordinated by our colleagues in the Neurological Alliance of Ireland (NAI) and Epilepsy Ireland are proud to support the campaign.
The campaign has been highlighting the overall shortage of neurology nurses – covering all conditions including epilepsy – across Ireland.
New research recently published in the British Medical Journal has reported a significant increase in the prevalence of epilepsy related deaths across an eight-year period.
Researchers from Kings College London assessed data collected from the period 2004 – 2014 which was captured by the UK’s National Clinical Practice Research Datalink. This is a national database in the UK which collects anonymous patient data from GP centres across the UK.
In my note to our members, volunteers, and supporters last year, I quipped that many of us would not want to dwell too long on the year that was 2020. If only I knew then what we know now!
A new epilepsy medication developed for the treatment of focal-onset seizures in adults has moved a step closer to being reimbursed in the UK.
ONTOZRY® (also known as Cenobamate) has previously posted positive results regarding its efficacy in the treatment of these seizures through clinical trials with 40-64% of patients (depending on dose) experiencing a 50% drop in the frequency of their seizures during 3 months of treatment compared with 26% of patients taking placebo.
During the summer, Epilepsy Ireland addressed the Oireachtas Committee on Tourism, Culture, Arts, Sport and Media on the proposed Online Safety & Media Regulation Bill.
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.