Christmas Message from Epilepsy Ireland CEO, Peter Murphy

In normal times, the end of each year allows for a period of reflection on the months that have passed us by. However, it is fair to say that for many, they will want to skip this end of year look-back and fast forward to January 1st so we can firmly put 2020 in the rear view mirror!

It has been an extremely challenging year for everyone across the country; none more so than for the families and friends of the over 3,000 people on this island who have passed away due to COVID-19. The new abnormal has been extremely difficult for so many. Everything that we are used to doing has been put by the wayside for the entire year. Stress, anxiety and worry have been the bywords of 2020.

However, we are ending the year on a note of hope. There have been numerous breakthroughs in the race for a vaccine and as I write this, it is looking likely that a vaccine programme will begin rolling out in the early part of 2021. Hopefully this see our new abnormal fade away into memory in the not too distant future.

You would be forgiven for thinking that 2020 has been all doom and gloom but there have been rays of positivity throughout the year and we have seen that first hand here at Epilepsy Ireland, both through what we have achieved and the support we have received.

2020 got off to a very positive start with our International Epilepsy Day campaign. Through Oliver, Lorraine, Gerard and Debbie – we asked the Irish public to sort the myths from the facts when it comes to epilepsy. Thanks to the dedication of our four volunteers and the team at Havas, our campaign was spread far and wide across the country on social media, traditional media and billboards. While the myths haven’t been fully toppled just yet, we know that through this campaign we have placed significant cracks in their foundations and we look forward to continuing this work in 2021.


 
 
 
 
 
 
 

Soon after the International Epilepsy Day Campaign, Covid-19 struck and despite the challenges that we and everyone across the country has faced, there has still been positives throughout this turbulent period.

Our dedicated team continued to support people with epilepsy and their families throughout 2020 albeit in new and different ways. As the pandemic hit, we worked quickly to adapt services for an online environment. The support offered by our Community Resource Officers is depended on by thousands of people across the country and it was imperative that we continued to keep our services in place as much as was possible in the circumstances.  We will continue to be there for you on the other side in 2021. 


 

 

 

 

The pandemic has meant financial challenges for individuals, businesses and charities alike. At Epilepsy Ireland, we are estimating that our fundraising income will be reduced by approximately €400,000 but despite the challenges that everyone has faced, we have seen people’s support and generosity shine throughout the pandemic.

All across the country, our dedicated members, volunteers & supporters have devised different ways to support our work while staying safe and keeping a distance. We have had people scale mountains; run many virtual marathons; host Facebook fundraisers; contribute in new ways to Purple Day® and Rose Week; and even in one case, dress up as power ranger and do 1km on a space hopper!

There are too many efforts to mention but your support for our work through these difficult times has not gone unnoticed and has been for us, a shining light in the dark year.

Thanks to your support and indeed to newly secured government funds under the Stability scheme for charities, we were able to fund projects that in March and April looked unlikely. For example, on SUDEP Action Day in October, we committed €25,000 to a new SUDEP and Epilepsy Deaths study to learn more about what is a feared and unknown aspect of epilepsy. We also funded a new study which will investigate the impact of losing one’s driving licence through an epilepsy diagnosis.


 

 

 

 

 

Read more about the study and SUDEP Day 2020 here

 

 

 

 


In addition to the support we have had from all of you, we have enjoyed fantastic support from our wonderful charity partners in Expert Electrical. Even though the retail sector has been badly hit this year, at every opportunity possible Expert has lent us their support by sponsoring prizes for Challenge 32; offering discounts to our members as part of Rose Week and by sponsoring our annual raffle. Not to forget their ongoing efforts in-store to help increase awareness of epilepsy.  While many of the plans we initially had for our partnership could not be implemented, Expert have been a constant support throughout the year and we look forward to continuing our partnership in 2021.


 

 

 

 


And there have been more positives to 2020 in relation to a key advocacy issue that Epilepsy Ireland has been working on alongside our colleagues in OACS Ireland. After years of campaigning on the issue, the Minister for Health announced he would be establishing an inquiry into the historical licensing of Sodium Valproate (Epilim). This was a major step forward for families who have been campaigning and we hope that an inquiry will allow families to finally get the answers they so richly deserve in 2021.


 
 

 

 

 


There is no doubt that it has been a tough year but also one with many positives as we work towards a society where no person’s life will be limited by epilepsy. Thank you for your support – whether it was through donating, liking & sharing online, being a member or by playing your part to raise epilepsy awareness.

Finally, a particular note of thanks to all healthcare workers for the trojan work they have done throughout the pandemic; particularly all those in the epilepsy services across Ireland. Innovations such as video clinics and the ongoing development of the epilepsy e-portal are just two steps that have helped ensure the best possible care was provided to people with epilepsy. Thank you to all, with a special thank you to the Epilepsy Ireland Advance Nurse Practitioner Sinead Murphy!

On behalf of everyone at Epilepsy Ireland, I hope that you have a wonderfully happy (and safe!) Christmas and we’ll be in touch again in 2021.

Yours faithfully,
Peter Murphy 
CEO,
Epilepsy Ireland.