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2023 Christmas Message from Epilepsy Ireland CEO, Peter Murphy

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Collage of images for 2023

Whether we can believe it or not, the final days of 2023 are fast approaching and as the year comes to an end, it allows us an opportunity to reflect on the successful year that was at Epilepsy Ireland.

Our support services continued to play a vital role for many people in 2023, and we were delighted to add several new programmes to our range of services during the year. In consultations for our current 2022-2026 strategic plan, EI members and service users highlighted the particular challenges facing young people living with epilepsy. In 2023, we focused on developing new initiatives for this group, including Monthly Meet Ups for young adults with epilepsy aged 18-24 and Teen Time, for teenagers aged 13-17. We were also delighted to launch the new EpiLearn app, our first foray into the world of e-learning, initially available with one learning pathway. We look forward to continuing to develop these projects alongside all our other services in 2024.

One of the outstanding highlights of 2023 was the International Epilepsy Congress which took place in Dublin in September. The Congress saw over 3,000 medical, scientific and research professionals working in epilepsy care, as well as epilepsy advocates,  descend on Dublin to share their experiences and learn from each other. The Congress is organised by the International Bureau for Epilepsy and International League Against Epilepsy every two years and as the local epilepsy organisation in the host country, we were delighted to play a leading role in the organisation of the event.

Historically, the congress has been aimed at the scientific and medical community but in 2023, we were delighted to bring a public-facing element to the event. EI arranged two public sessions featuring some of the leading global experts working in epilepsy care, presenting directly to those who matter most – people with epilepsy and their families. The event also featured a Youth Summit where eight incredible young Epilepsy Ireland volunteers did us, themselves, and their country very proud by openly discussing the challenges which can exist in living with epilepsy and how we can work together to overcome them. In another important new development, the majority of scientific sessions featured at least one expert-by-experience speaker, including several from Ireland. We hope these developments will continue to be a fixture of the Congress as it travels across the globe.

There were many other memorable highlights from the week, including the Taoiseach’s address and State Reception; an Irish Golden Light Winner in the form of EI volunteer Wayne O’Reilly; and of course the great weather which played a starring role as well!

If you didn’t get to attend the public events, they are available to watch back by visiting the Our Services section of our website.

Collage of Congress
Some of the memories made at the 35th International Epilepsy Congress

Sadly, we also said goodbye in 2023 to a service that had been a fixture of our work for almost 25 years – Training for Success (TFS). TFS was a QQI Level 5 one-year course at the ATU Sligo aimed at supporting people with epilepsy whose condition may have impacted on their education outcomes. The course was of huge benefit to hundreds of young people with epilepsy over the years, with many pointing to their participation in the course as a turning point in their lives. However, in recent years, with attitudes to epilepsy changing for the better, and with many more adult education courses becoming available, interest in the course had waned and the decision was taken that the course would end in 2023. While it was sad to see the course ending, we can be proud of the impact TFS made and the positive legacy that it has had in the lives of so many.

The decision to end TFS has enabled us to increase our focus and resources on another aspect of our training service – the provision of much needed training in Epilepsy Awareness and the Administration of Buccal Midazolam. By the end of this year, we will have provided this vital training to over 2,500 healthcare professionals, SNAs, teachers and an ever-increasing range of workers and volunteers whose role sees them in contact with people with epilepsy.

2023 was a significant year for our Research programme as we surpassed the €1.5 million mark in total investment in epilepsy research projects since the launch of our funding scheme in 2009. This is a considerable investment for an organisation of our size; and an investment that would not have been possible without the continued support of hundreds of research donors across the country. There are currently eight active projects which you can read more about in the Research section of our site. This year saw one new project begin, an RCSI-led project to identify, alongside women with epilepsy, their families and healthcare professionals, the specific health information needs along the preconception to postpartum continuum. The project will also develop evidence-based resources to support women and health professionals during this period.

2023 has also been a watershed year for our advocacy work with several campaigns brought to a positive conclusion. Perhaps the most significant of these was the government’s budget commitment to expand access to the Free Travel scheme for people with epilepsy in 2024. We hope that the necessary changes will be officially made to the scheme from next July, allowing those who are medically unfit to drive for at least one year to benefit from a Free Travel pass. 

Working with our colleagues in OACS Ireland, we also secured Government approval to establish an inquiry into the historical licensing and prescribing of Sodium Valproate.  We were delighted to receive this commitment after a joint campaign that lasted for over a decade.

With a Terms of Reference agreed for the inquiry and the Department of Health currently in the process of appointing a Chairperson for the inquiry, Epilepsy Ireland has now adopted a different role in relation to the inquiry. Although a number of outstanding matters remain such as Chair, inquiry resourcing, and ensuring families are supported to take part in the inquiry effectively, it is vital that decisions on these specific matters, above all else, meet the needs of those most directly affected. Ultimately, those needs are best represented by the families themselves, and therefore OACS Ireland will be leading on these final steps in 2024. We look forward to this long-awaited inquiry being officially established in 2024.

Meanwhile, students with epilepsy sitting their Leaving Cert in 2024 will enter their exams knowing that a deferred sitting of the exams can be accessed should they experience a seizure before or during their exams. This is the result of yet another longstanding campaign by Epilepsy Ireland that finally paid dividends in 2023.

We look forward to engaging with you – our members, services users, volunteers, and supporters - about new epilepsy advocacy priorities in 2024 – particularly in light of looming local & European elections, as well as the possibility of a General Election.

Minister Heather Humphreys and quote
Minister Heather Humphreys specifically highlighted the work of EI when announcing the Free Travel changes

Speaking of deferred exams, we are delighted to announce Rachel Langan from Galway as one of two recipients of our Volunteer of the Year awards for 2023. Rachel was a leaving cert student in 2022 when she experienced a seizure during an exam which meant she was unable to either complete it or obtain a deferred sitting. Rachel was incredibly brave in speaking about her experience in the media at the time. Her contribution came at a vital moment in our campaign for deferred exams and her input was instrumental in achieving the change that was finally secured this year, one which will benefit many future generations of students with epilepsy.

Irish Times article with Rachel Langan
Some of the coverage of Rachel's story.

Our other recipient this year is Mark McGuire from Kildare. In the name of his son Ciarán, who was diagnosed with epilepsy in 2022, Mark took on the gigantic task of climbing Mount Kilimanjaro to raise funds for Epilepsy Ireland. A massive €8,271 was raised in support of our work. While the funds raised were incredible, the awareness Mark raised for epilepsy and Epilepsy Ireland as part of his training and preparation, was priceless. Mark used his fundraising page and several media opportunities to speak about their epilepsy diagnosis journey with Ciarán.

Mark on top of Kiliminjaro with EI flag
Mark flying the flag for EI!

A huge thank you to Mark and Rachel for the impact they have made and congratulations on being our Volunteers of the Year for 2023.

Selecting the award winners this year really reminded us how fortunate Epilepsy Ireland is to have the support of incredible people all across the country who are committed to both raising awareness of epilepsy and raising the funds that are needed to continue our journey towards a society where no person’s life is limited by epilepsy. If you have supported the work of Epilepsy Ireland in any way throughout 2023, I would like to put on record our sincere thanks and gratitude to each and every one of you.

Looking ahead to 2024, we hope we can continue to depend on your incredible support for key awareness and fundraising activities. Monday 12th of February will be International Epilepsy Day and we are currently very busy planning out the big day. The new Stand Up campaign has already made a public appearance, with our incredible volunteers Paul and Lucy fronting a poster campaign across Dublin in September and October. We look forward to building on this in 2024 as part of our activities for #EpilepsyDay and you can find out how you can get involved in the campaign by visiting the Awareness section of our website.

Paul and Lucy
The posters featuring Paul & Lucy

From a fundraising perspective, we are also getting ready for Purple Day® on March 26th. This is a major day in our calendar and we will be appealing for your continued support in the lead-up to the day and on the day itself to support our fundraising efforts. You can find out more by visiting the Purple Day ® page on our website. With thoughts soon turning to New Year Resolutions, perhaps 2024 will be the year when you consider taking on a challenge such as a marathon or mini-marathon in support of Epilepsy Ireland? Over €30,000 was raised by our incredible volunteers taking on various runs and challenges in 2023 and if you’d like to help improve on this, you can find further details in the Fundraising section of our website.

Some of our Maratho participants
**Some** of our marathon participants this year

2023 has been an incredibly productive year for our organisation and one that has only made all the staff team even hungrier to achieve more progress in 2024 on our journey towards a society where no person’s life is limited by epilepsy. Thank you to all our team who made all of the achievements possible, our voluntary board and committee members for their leadership and guidance, and to all our members, service users, volunteers and donors for the immeasurable efforts that underpins everything we do.

We hope you will continue with us on the journey ahead but in the meantime, on the behalf of everyone at Epilepsy Ireland, I would like to wish you a Happy Christmas and every best wish for the New Year.

Peter Murphy,
Epilepsy Ireland