20-12-2017| A Christmas Message from Epilepsy Ireland

20 December 2017
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On behalf of Epilepsy Ireland, I would like to take this opportunity to say a very special thank you to all our supporters in 2017. As we approach 2018, it is time to reflect on what has been a very busy 12 months.

Epilepsy Ireland's support services are central to our work in supporting many of the 37,000 people with epilepsy across the country. I'm pleased to say there are now more self-management courses than ever before with growing demand for STEPS, Parents STEPS, the Innerwise programme and Living Well with Epilepsy.

Meanwhile, our training programme in epilepsy awareness and the administration of buccal midazolam will train over 1,600 health and allied health professionals by the end of the year and we have exciting plans for extending this training in 2018.

Seizure the day

Last October a short fictional film created by young people with epilepsy and inspired by their own experiences, had its premiere at the Irish Film Institute (IFI) in Dublin. 'Seizure the Day' was written, filmed and acted by the young people during a national filmmaking project in 2017, led by Epilepsy Ireland and Helium Arts, the national children's arts and health organisation. The film and the documentary on its making is a truly inspiring piece of work and I know that the project has had a real impact on the dozens of young people (see pic below) that took part.


Epilepsy Ireland is proud of our Training For Success Course (TFS) one-year course at IT Sligo and we're delighted that programme has now been upgraded to a FETAC Level 5 from 2017. This will improve the already high standard of TFS and open up the course to new students both in the short and long term. Congratulations to this year's graduates (some of whom are pictured below) who I'm sure will have a bright future ahead of them.


Funding epilepsy research is also important to us at Epilepsy Ireland. We were overwhelmed by the quantity and calibre of applications from universities and institutions around the country for our 2017/18 Research Funding Call recently. With 15 applications in total, there are unfortunately far more than we can hope to fund and a shortlisting process is now underway to identify where we can make the best possible research investments in 2018.
One new research project was funded in 2017. The investment of €145,000 at RCSI, co-funded by the Health Research Board looks at identifying biomarkers for the ketogenic diet and has the potential to significantly improve epilepsy treatment in the future, particularly in children.

In February of this year, results of the three-year SENSE study funded by Epilepsy Ireland were launched that found Epilepsy Specialist Nurses (ESNs) had a very positive impact on the health of people with epilepsy. The study also found that ESNs were a cost effective way of delivering quality care to thousands of epilepsy patients. The study was conducted by Prof Agnes Higgins, from the School of Nursing and Midwifery, Trinity College Dublin, and will play an important role in our efforts to advocate for improved epilepsy services in Ireland.

The How2Tell study also at Trinity College on epilepsy disclosure, funded by Epilepsy Ireland in 2013 was launched last autumn. As part of the study, a new phone app, microsite and printed materials were released using real-life experiences to assist people with epilepsy in the often difficult matter of how and when to tell others about epilepsy.

Epilepsy Awareness
In 2017 we continued to raise public awareness of epilepsy. International Epilepsy Day (February 13th) focused on awareness of the condition in the workplace and gained national media coverage as well as being the number one Twitter trend throughout the day. On March 26th Epilepsy Ireland backed the Purple Day campaign for the first time with 30 well known Irish buildings such as The Convention Centre showing their support for the cause. 
The second phase of the I See Beyond campaign also focused on epilepsy and hidden disability in the workplace and featured a number of positive case studies for employers. Later in the year I See Beyond also crowned Hays Recruitment Ireland (below) as the overall winner of the Hidden Disability Employer Awards.

Continuing the theme of epilepsy in the workplace, we conducted a survey among people with epilepsy which found that 58% of people with the condition who are in employment now feel comfortable telling their employer and work colleagues that they have epilepsy – a very encouraging increase of 14% when compared to a similar 2012 survey.

It was also a busy time for our volunteers and supporters and I would like to pay tribute to each and every one of you who took part in our many fundraising activities throughout the year, events such as Churchgate Collections, Rose Week, Ireland's Ancient East Peaks Challenge, the National Saddle up for Epilepsy cycle (below), marathons and many more.

As you know our Annual Rose Week Appeal is Epilepsy Ireland's most important fundraising event. Not only does it raise funds to support our services, but it also creates awareness about epilepsy and the work that we do in Epilepsy Ireland. We are very grateful for the support you have given us with Rose Week in the past and would appreciate your support for Rose Week 2018, which runs from 12th February to the 22nd February. By giving a few hours of your time, you can help 'Shine a light on Epilepsy'

Not only that, everyone who volunteers during Rose Week will be entered into a draw for a Sunway Holiday. You can volunteer at a location and time that suits by emailing volunteer@epilepsy.ie or by calling our team on 01 4557500
We are proud of what we have achieved in 2017 but it would not be possible without the efforts of thousands of supporters up and down the country. Thank you one and all for your outstanding work and we look forward to your continued support in 2018
From myself and everyone at Epilepsy Ireland, I hope you have a very peaceful Christmas and a Happy New Year.
Best wishes,
Peter Murphy
CEO, Epilepsy Ireland

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