As part of their activities in the lead up to World Brain Day on July 22nd, our colleagues in the Neurological Alliance of Ireland (NAI) have launched a new survey aimed at measuring the impact of COVID-19 on access to services for people living with neurological conditions.
Kerry County Council recently supported a motion supporting our ongoing campaign for access to Free Travel pass for people with epilepsy.
The motion was brought forward by Cllr. Fionnán Fitzgerald and was supported by his council colleagues.
We would like to make those with photosensitive epilepsy aware that new Disney film, Cruella contains potentially triggering content for those living with the condition.
Those with photosensitive epilepsy can have seizures as a result of an exposure to intense light or visual lighting pattern. Approximately 3-5% of the wider epilepsy community experience seizures due to photosensitivity.
A new charity has been established to support parents and families affected by Dravet Syndrome and other severe genetic epilepsies.
During National Epilepsy Week, we highlighted an issue which we would we like to see addressed under the proposed Online Safety & Media Regulation Bill - namely that the bill would contain a reference to content maliciously shared to induce a seizure in a person with photosensitive epilepsy.
We would like to thank everyone for their support throughout Epilepsy Week.
Throughout the week we shared details on a number of issues which are impacting on people with epilepsy and their families and encouraged people with epilepsy, the public and politicians to #AdvocateForEpilepsy in an effort to have these many matters addressed.
We are delighted to provide an update to our members and supporters regarding our ongoing advocacy campaign for #EpilepsyWeek. Today we have been raising awareness of the need for the proposed Online Safety & Media Regulation Bill to contain a reference to potentially harmful online content which - in itself - is designed to cause harm. You can read more on that HERE.
The final issue we raise as part of #EpilepsyWeek is concerning an upcoming piece of legislation called the Online Safety & Media Regulation Bill.
The bill aims to protect our citizens from harmful content online which is very welcome however - we believe that a specific reference could be made in the legislation to help protect people with photosensitive epilepsy online and to ensure that a particularly disgusting form of online trolling will be a criminal offence in Ireland.
On the Thursday of #EpilepsyWeek, we focus on an issue which had to addressed before the launch of the Medical Cannabis Access Programme.
As the programme is being prepared for launch, approved products which will be able to be accessed under the programme have been added. To date, 4 products have been approved.
Today as part of #EpilepsyWeek, we are highlighting an issue which specifically impacts on our young people with epilepsy who are sitting their Leaving Certificate.
Currently, if a student with epilepsy has a seizure during their exam and are unable to complete their exam as a result, there is no provision to resit this exam within the same cycle. Instead, students with epilepsy will have to wait a year until the next cycle to retake their exam.