With 2024 drawing to a close, it is an opportunity to reflect on the work of our organisation and how we have progressed on our journey this year towards a society where no person’s life is limited by epilepsy. It is also an opportunity for me – on the behalf of everyone at Epilepsy Ireland - to thank each and every one of you for your continued support for our organisation’s mission and aims. Everything you read about here – and everything that I have not been able to mention – would not have been possible without your dedication and enthusiasm in assisting us whenever and wherever called upon.
For many people with epilepsy, the biggest highlight of the year was the realisation of something which was an aspiration for many, many years. In July, a new Free Travel scheme for those deemed medically unfit to drive for at least a year came into effect. This is something that we had long campaigned for at EI and to see it finally happen was a very proud moment for everyone associated with our organisation. This scheme will help many people with epilepsy who are impacted by driving restrictions and the response from people who have benefited from this change was truly heartwarming. This impact can be seen in an article written by our media volunteer Eva, which can be read by visiting the ‘Advocacy’ section of our website.
Thank you to everyone involved in helping make this scheme a reality, including all the elected representatives from across the political spectrum who supported our campaign. I would like pay a particular tribute to retiring Minister, Heather Humphreys, for delivering this new scheme – one which will have a positive impact for many years to come.
At the time of writing this note, a new Government is in the process of being formed. We now look to the future and to highlighting new campaigns, as prioritised by our members and service-users, aimed at improving the lives of people with epilepsy and their families. As part of the recent General Election, we raised these key issues with candidates, many of whom are now TDs. We look forward to working with all members of the 34th Dáil to progress these issues – and once again, will require your support in 2025 to help amplify these calls. You can read about our new campaigns by visiting the ‘Advocacy’ section of our website.
One of these campaigns focuses on the need to develop a National Strategy to reduce SUDEP and Epilepsy-related deaths in Ireland – a campaign which has already garnered significant attention. In October, a study led by Dr. Yvonne Langan of St. James’s Hospital - and supported by Epilepsy Ireland - published its findings. This study established the incidence rate of Sudden Unexpected Death in Epilepsy in Ireland at 1:1400, equating to 33 people lost each year.
The study’s findings and our calls for action to reduce these numbers received significant attention including features on the RTÉ Six One News and across other leading media platforms. This research is continuing and in 2025, will detail the incidence of total epilepsy-related deaths in Ireland (deaths arising from SUDEP and deaths related from seizure-related injuries/ accidents, and status epilepticus). We hope that this data will strengthen our existing calls for targeted action in this area - you can read our recent correspondence to the Minister for Health by visiting the 'News' section of our website.
It is important to once again note that our investment in this important research study would not have been possible without your support. We have invested over €1.5 million in over 20 research projects since 2009. In 2025, we hope to increase on that as we will be launching our 9th call for funding applications under the HRCI-HRB Joint Funding Scheme. During the year we will be looking for your input and ideas in setting priorities for how you would like to see EI’s research funds invested.
As is the norm, our services team continued to experience high demand as we aim to support people with epilepsy and their families on their journey with the condition. We have seen our services adapt and change over the years to help better serve the needs of people with epilepsy and their families and this year was no different. One example was the introduction of online morning and evening support groups for both adults with epilepsy and parents of children with epilepsy. This has enabled people to attend at a time that suits them best and provided greater opportunity to meet with others within the epilepsy community in Ireland.
Perhaps the biggest service development we have had this year is the new Youth Resource Officer role to deliver our Young Epilepsy Programme. This role is vital in achieving our aim of directly supporting young people with epilepsy from an early age through one-to-one support and targeted activities such as Get ChARTy, Teen Time, and the Young Adult Group. Through all these offerings, the overall goal is to make young people more aware of the importance of the self-management of their condition which should help improve their quality of life in the future. Ultimately through each of these offerings, what we want young people to recognise is that while their condition may be part of their life, it does not have to define it. By supporting young people to be more open about and comfortable with their condition from an early age, this should also help to eliminate stigma in the future.
The Youth Resource Officer role was identified as being a key objective of our Strategic Plan 2022-26 and was made possible thanks to support from Angelini Pharma, something we are incredibly grateful for. You can read more about the Young Epilepsy Programme by visiting the ‘Our Services’ section of our website.
My final note on our services is simply to remind everyone reading that we offer a range of support services and events all year-round. While some of these will be featured on our social media channels and in our free e-zine, it is not possible to promote each event individually due to competing priorities for social media coverage and the increasing volume of events we host – so please make sure you regularly visit the ‘Events’ section of our website to see what’s happening during the year.
The early part of 2024 also saw a continued push to make TIME, SAFE, STAY and seizure first aid part of public general knowledge through International Epilepsy Day and our volunteers, Cara, Wayne, Paul & Lucy. The campaign was simple but effective, showing how many words have been written about epilepsy, but reminding people that there’s only three that you need to remember when it comes to responding to a seizure. Check out the #EpilepsyDay video below!
The campaign certainly made a splash, securing fantastic media coverage across several platforms – which would not have been possible without Cara, Paul, Lucy and Wayne being so willing and enthusiastic to front the campaign. You can look back on some of the highlights of the campaign by visiting the ‘Awareness’ section of our website.
Understanding the impact of public awareness campaigns is central to ensuring our limited resources are properly targeted towards strong, easy-to-understand messages such as TIME, SAFE, STAY each year. For the past 10 years, we have been regularly commissioning and tracking ‘market research’ data on public awareness of and attitudes to epilepsy. It is very interesting and encouraging to look at some of the changes that have taken place in that time. For example:
- A person should be restrained during a seizure – 18% agreed with this statement in 2013 compared to just 5% in 2024.
- Almost all seizures involve falling to the ground followed by stiffening and jerking movements – 43% agreed this statement was true in 2013. This had fallen to 19% in 2024.
- Put an object in a person’s mouth during a seizure – 51% agreed with this statement was true in 2013 vs 21% in 2024.
- Timing the seizure is a key seizure response – 1% said this was correct in 2013 but thanks to TIME-SAFE-STAY, this jumped to 45% by 2024.
- All people with epilepsy must avoid flashing lights – 71% agreed with this statement in 2013 vs 56% in 2024.
Public attitudes do not change overnight and there is still work to do but is clear that we are moving in the right direction. So much of that is down to our volunteers amplifying epilepsy awareness messages and being more and more open about living with epilepsy. We hope that you will continue to help us raise awareness for International Epilepsy Day next year (February 10th), and every day aside from that! You can find out more about how you can get involved in #EpilepsyDay 2025 by visiting the ‘Awareness’ section of our website.
As many reading this will know, we depend on fundraising to continue our vital services across the country. While we greatly appreciate the state funding we receive, on average, it only covers approximately 50-60% of the cost of delivering our services and activities each year. 2024 was no different to previous years in that there are too many incredible individual fundraising efforts to mention in this short summary of the year. There have been tractor runs, sky dives, marathon runners a plenty, coffee mornings and everything else that you can possibly think of in between – all to help continue our journey towards a society where no person’s life is limited by epilepsy.
Our supporters also rowed in behind our core fundraising events in 2024 as well. For example, this year was the second year of our 45 for Epilepsy Challenge. Participants, including people with epilepsy, their families and workplaces were tasked with either walking or running 45km across a week, highlighting the fact that there are 45,000 people who live with epilepsy in Ireland and raising funds for our work. Not only did they smash their challenge – but they collectively smashed the fundraising target for this new, growing event – raising over €21,000 in support of our work.
There is one company in particular I want to mention given their incredible support for Epilepsy Ireland in 2024, and that is Peter Mark. We were proud and privileged to be the beneficiaries of the 2024 Petermarkathon, their annual fundraising drive.
During the week of October 21st – 28th, the 69 Peter Mark salons across the country came up with incredibly inventive ways to raise funds to support our work. Anyone who follows our Instagram page will have seen first-hand some of the fun ways Peter Mark staff got involved – with raffles galore, fancy dress, sponsored cycles and even multiple sightings of two very famous brothers from Manchester as part of an Oasis-themed event in one salon! Peter Mark salons also worked to raise awareness of epilepsy amongst their clients - with many salon regulars revealing their own personal connections to epilepsy, helping start a wider conversation about the condition. Their fundraising efforts were incredible, and we are looking forward to announcing the final amount raised very soon!!
The partnership with Peter Mark has shown just how impactful a corporate partnership with Epilepsy Ireland can be – both in terms raising awareness of epilepsy, and raising funds for Epilepsy Ireland. If you are interested in becoming a corporate partner with EI, or if you can nominate us to become a corporate partner at your workplace, please get in touch with our Fundraising & Development Manager Cian by emailing cdikker@epilepsy.ie.
As we look ahead to 2025, we hope that you will continue to be there to support our work. The first major fundraising event we have is Purple Day® - a day when we appeal to the wider public to go purple for epilepsy awareness. Whether you’d like to develop your own purple themed challenge, host a bake sale at home or school, or sell our purple wristbands, we’d love to make you part of Purple Day® 2025. If you’re interested in getting involved, get in touch with our Community Fundraising & Events executive Méabh Lonergan by emailing mlonergan@epilepsy.ie.
I hope these highlights show what a productive year that it has been for our organisation, and I would like to thank all our staff team who have made this possible. Once again, thank you to everyone reading this for your own support. We remain committed to our vision and our team will soon be taking a Christmas break to rest, recharge and return in 2025 revitalised to make further progress on our journey towards a society where no person’s life is limited by epilepsy.
On behalf of everyone at Epilepsy Ireland, Happy Christmas and every best wish for the year ahead.
Peter Murphy,
Chief Executive Officer