Christmas Message from Epilepsy Ireland CEO, Peter Murphy

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!

COVID-19 is still with us, but we are in a much better place than where we were this time last year. Vaccines have proven to be an effective shield against serious COVID-19 infection. As the attention now turns to strengthening our shields, I would encourage all our members and supporters to get their booster vaccines when offered. 

While 2021 has had its challenges here at Epilepsy Ireland, it has also been a busy and fruitful year.

At the start of 2021, COVID-19 and in particular the planned vaccination programme was front and centre. Our team worked to answer a multitude of queries about what this meant for people with epilepsy. Our vaccine page on our website has been one of the most visited on the site during the year. Thanks to experts such as Professor Norman Delanty and our involvement with the International League Against Epilepsy Covid-19 task force, we were able to provide our service users with the most accurate and up to date information available.

Our team of Community Resource Officers continued to deliver services online. Early in the year, we organized an array of online seminars – too many to mention – featuring experts in epilepsy and from other fields such as mental health and diet. We also organised our first online National Conference over three days in September/October and November, and held a series of workshops on epilepsy research. While we are eager to once again deliver face-to-face events, online events are certainly going to be part of our service in 2022 given their success this year. Keep your eyes on the events section of our website throughout 2022 for details of these.

International Epilepsy Day 2021 was our first big awareness campaign of the year. We used the analogy of a computer crashing to help the public understand what a seizure is and promoted the key first aid message of TIME – SAFE – STAY. The campaign was a huge success and garnered a great deal of attention in the media and on social media. Additionally, our campaign was shortlisted for an ICAD advertising award. A huge thank you to our volunteers who fronted the campaign - Nicola, Grace, Leah, Wayne, and Oliver and of course our wonderful Patron Rick O’Shea who was again a great advocate for epilepsy awareness. We’re already looking forward to International Epilepsy Day 2022 which takes place on the feast day of St. Valentine, the patron saint of epilepsy!
Image of our Time Safe Stay campaign with volunteer Grace

Purple Day® continues to gain momentum and in 2021, our supporters did their utmost to turn Ireland purple. With restrictions still in place, our Community Resource Officer, Veronica Bon had the wonderful idea of knitting a giant purple patch. Thanks to our volunteer knitters across Ireland, the giant patch was unveiled by the children of Kilkishen National School National School on the big day. This was a brilliant example of community spirit and togetherness during tough times, and it was truly heartwarming to see all the creative and fun ‘purple’ activities that people came up with to raise awareness and funds.
Image of children unveiling Purple Patch

There was a huge focus on our advocacy agenda in 2021 and real progress has been made on many of the priorities identified by our members and service users. Our long running campaign for more appropriate reasonable accommodation for students with epilepsy sitting exams has been one such issue, with alternative leaving cert sittings for students with certain to-be-decided medical conditions announced this year. Free travel also remained near the top of the agenda, and we look forward to meeting the Minister for Social Protection early next year to discuss our proposals.

Our efforts on advocating for access to Epidyolex were rewarded in December when it was announced that the medication will be reimbursed from January 2022. We will continue to advocate for better access to the Medical Cannabis Access Programme for people with epilepsy in 2022.

Although a year has passed since the announcement by Minister Donnelly of an inquiry on sodium valproate, the inquiry has yet to be established. We continue to work with the Department on this and on the need for a more coordinated national approach to reduce the risks of this medication in women. We are very hopeful of concrete results in early 2022 on this and, touch-wood, on the other issues above during the year.

In September, we launched our 8th call for research funding proposals and six proposals have been received. These are being peer-reviewed at present and we hope that at least one will be funded under the HRB-HRCI Joint Funding Scheme in 2022. We are also funding a new study on the potential impact of ultrasonic stimulation in epileptic encephalopathy at NUIG. We have also committed to supporting up to three new PhD and Postdoctoral research projects at RCSI next year. 

2021 was also a year where a past research investment bore fruit with the publication of data by Dr. Neil Powell from Queens University Belfast showing that untrained dogs CAN predict seizures. The findings are of great interest to everyone in the epilepsy community and provides new opportunities to promote safety and reduce seizure risks.
Image of media coverage about dogs predicting seizures

At Epilepsy Ireland, we pride ourselves on applying the highest standards when it comes to good governance and quality. This year, we confirmed our full adherence to the Charity Regulator’s Governance Code and secured the gold-standard ‘Triple Lock’ status from the Charities Institute. We also attained the “IQ” Foundation Quality Mark, a quality system developed specifically for small to medium-sized Community & Voluntary Sector Organisations.

None of this would be possible without the support, involvement and goodwill of so many people. The list is virtually endless, but I want to thank our voluntary board members, our dedicated staff team and all those in the medical and scientific profession who contribute to our work.

Most of all, thank YOU - our members and supporters who have helped bring about positive change during 2021. Thank you to everyone who attended and participated in events; contributed to awareness raising efforts; wrote to TDs about epilepsy issues; took part in research; helped spread the word on social media; took part in strategic planning workshops; took part in our surveys……and so much more.

With our fundraising income down 50% due to the ongoing pandemic, I want to say a special thank you to everyone who helped raise money for our work this year. Whether you supported Purple Day®, Rose Week, our national raffle, the Time for a Break draw, made a donation or organized your own online or offline event, your extraordinary efforts were of great importance during a difficult time for so many.

We know already that many people are planning similar initiatives in 2022 as part of our fundraising days such as Purple Day® or as part of their own personal challenge and we look forward to working with all our valued volunteers to support you in your efforts. 2022 promises to be another challenging year on many fronts, but with your support, we know it can be another year of real progress.

As the year comes to an end, I want to take a moment to remember some of those who are no longer with us. 
Image of late Louise Young & Bernard Hughes

In January we learned of the untimely passing due to SUDEP of Louise Young from Wexford, an active Epilepsy Ireland volunteer in helping to raise public awareness of epilepsy. Louise’s family and friends have continued her work by raising an extraordinary €40,000 for Epilepsy Ireland, money which has brought a long-time ambition of ours to the cusp of reality. We expect to announce further details on this in 2022 but it is a development which we believe will have a positive impact for hundreds of families across Ireland and will be a fitting legacy for Louise. While I did not know Louise personally, I know from the Epilepsy Ireland team members who did know her that she made a lasting impression on everyone she met. I have had the opportunity to meet Louise’s family during the year and their strength and dedication in supporting our organisation in the face of such an immense loss has truly been inspiring.

In November, the epilepsy community lost one of our great champions in Cork’s Bernard Hughes. Bernard was the face of Epilepsy Ireland (then Brainwave) in Cork for over 30 years. Before there were Community Resource Officers, there was Bernard. As a person with epilepsy, Bernard worked (as a volunteer) to support, educate and inform countless others about epilepsy. He never shied away from talking about his own epilepsy, even at a time when many people preferred to keep their epilepsy hidden. He was also a tireless fundraiser, raising an estimated €1 million over his long association with our charity, before retiring in 2016.  A true champion of the cause, he will be sorely missed by all at Epilepsy Ireland who knew him.

As 2021 comes to a close, it is time to look to the future. Our world has changed in the past two years and to respond to the new challenges, we began a new strategic planning process this year which will shape our direction at Epilepsy Ireland over the next five years. I want to thank all our members and stakeholders who have contributed to the process and we look forward to launching the new plan early in the new year.

One thing that is for sure is that we will remain focused on achieving a society where no person’s life is limited by epilepsy. 

Thank you and have a wonderful Christmas and New Year. 

Yours faithfully,
Peter Murphy 
CEO, Epilepsy Ireland