Epilepsy News - Epilepsy Ireland

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Epilepsy News - Epilepsy Ireland
Epilepsy News
                                   Epilepsy Ireland Issue 84 Spring 2019

                                IN THIS ISSUE:
First National Conference   •   Brexit: will it affect epilepsy medication?
                            •   Kevin O’Connell: my first seizure
on the Consequences of
                            •   Mark O’Reilly: epilepsy and fitness
Sodium Valproate            •   Prof. Mark Cunningham: the role of
                                neuroscience
Epilepsy News - Epilepsy Ireland
CONTENTS                                    NOTE FROM THE EDITOR                                      Conor Culkin

3.   News Update                                               We have another busy issue of Epilepsy News, which includes a
                                                               variety of articles I hope you will enjoy. Speakers from the recent
4.   Impact of Brexit on
                                                               conference on the consequences of Sodium Valproate feature
     Medication Supplies
                                                               on the front cover of this issue. This important event brought
5.   Report on Sodium                                          together professionals and policy makers with the families
     Valproate                                                 affected by Sodium Valproate and was organised by Epilepsy
6.   TFS Award Winning Course                                  Ireland, HSE, OACS Ireland, FACS Forum and Trinity College. On
                                                               page 5 we have the latest news on the drug which includes a
7.   Overcoming my Epilepsy
                                                               HSE report on the issue. Brexit has created uncertainly about
8.   The Role of Neuroscience             medication and on the previous page we clarify the situation in relation to epilepsy
9.   New Light on                         drugs.
     Mitochondrial Epilepsy               This issue also includes a revealing personal story from Kevin O’Connell (Page 7) a 19 year
10. Epilepsy and Exercise                 old journalism student who will document his epilepsy story in a series of articles for
11. Learning to breathe again             Epilepsy News. On page 9, Dr. Gareth Morris from FutureNeuro discusses mitochondrial
12. Fundraising                           epilepsy, a piece which is taken from a new blog called ‘Epilepsy In English’. In addition,

13. Joe Schmidt supports                  fitness expert Mark O’Reilly offers some exercise tips for people with epilepsy on
    International Epilepsy Day            how you can start and most importantly be safe while improving your health. On the
                                          following page Epilepsy Ireland member Jenny Snook discusses an alternative treatment
14. Regional Events                       that helped her anxiety and epilepsy, which is known as ‘The Buteyko Breathing Method’.
                                          Finally, I would like to announce some personal news. After nearly three years editing
Front cover:                              Epilepsy News and working fulltime as Epilepsy Ireland Communications Officer I am
Pictured at the First National            moving onto pastures new. I would like thank everyone who helped contribute to this
Conference on the consequences            magazine since the autumn issue of 2016. I hope the articles have been informative and
of Sodium Valproate (l-r) are Geoff       thank everyone who has contacted me with feedback and suggestions.
Day (OACS Ireland); Karen Keely
                                          This is a great organisation with lots of dedicated people and I hope I’ve played a small
(Chairperson, OACS Ireland) and
                                          part in Epilepsy Ireland’s success. Best of luck to all for the future.
Dr Peter Turnpenny, (Consultant
Geneticist, Exeter, UK). The
conference was held at Trinity
College on March 22nd.                      STAFF APPOINTMENT: LUKE MEANY

                                                                                                    Luke Meany is the newest
                                                                                                    member of the Fundraising and
                                                                                                    Communications team here at
                                                                                                    Epilepsy Ireland. Luke joined
                                                                                                    the team at end of November
                                                                                                    as a Graduate Fundraising and
249 Crumlin Road,                                                                                   Communications trainee. Luke
Dublin 12.                                                                                          is highly enthusiastic about
Tel: 01 4557500                                                                                     his new role and is motivated
Fax: 01 4557013                                                                                     to help develop numerous
Email: info@epilepsy.ie
                                                                                                    fundraising initiatives here at
Web: www.epilepsy.ie
                                                                                                    Epilepsy Ireland. Luke studied
Registered Charity Number:                                                                          Sociology and Social policy in
20010553                                                                                            UCD and most recently received
CHY Number: 6170                                                                                    his Master’s Degree in Sociology
                                                                                                    and Politics from NUIG.

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Printed by Doggett Print & Design
                                      2
Epilepsy News - Epilepsy Ireland
NEWS UPDATE

                                                  response to stress are related to seizure      then correlated the degree of night-time
                                                  activity.                                      supervision (e.g, no supervision; a listening
                                                                                                 device, roommate, or physical checks at
                                                       https://goo.gl/fXNdJs
                                                                                                 15-minute intervals; or 2 of the following:
                                                                                                 a listening device, roommate, additional
                                                  European Scientific Journal                    device, or physical checks at 15-minute
                                                  Highlights the Contribution of                 intervals) with outcomes.
                                                  Irish Neurological Charities                   The total number of SUDEP instances was
                                                  A collaborative paper led by the               3.53 cases per thousand patients. The first
Michael Fassbender shows his     Neurological Alliance of Ireland has been                       residential centre incidence rate was 2.21
support for Brain Awareness Week published in the European Journal of                            cases per thousand patients in comparison
Internationally renowned actor Michael            Neuroscience entitled “Building a Supportive   to the second centre where a rate of
Fassbender showed his support for the             Framework for Brain Research in Ireland”.      6.12 cases per thousand was recorded.
Love your Brain campaign for National Brain       The paper highlights the vital role played     Importantly, the study found that the
Awareness Week (March 11th to 17th). In           by neurological charities (including           first centre had higher levels of nocturnal
his endorsement video, Michael highlights         Epilepsy Ireland) in supporting research       supervision than the second centre. A larger
the need to raise awareness on behalf of the      into neurological conditions in Ireland        proportion of patients with SUDEP were
800,000 Irish people living with neurological     and profiles a number of NAI member            more likely to have nocturnal convulsive
conditions.                                       organisations.                                 seizures compared with control participants.
The campaign aim was to promote greater           Overall, the paper provides an important       Patients who died from SUDEP were also
awareness and understanding of the brain          overview of the landscape for brain research   more likely to have a higher frequency of
and brain conditions as well as the need for      in Ireland, highlighting the progress and      nocturnal convulsive seizures.
more investment in services, research and         potential in exploring rare and genetic        As nocturnal seizures and sleeping position
prevention. Love your Brain was supported         conditions but pointing to the need for        often are factors in SUDEP, investigators
by over 20 patient organisations including        dedicated investment in neuroscience           emphasized the importance of nocturnal
Epilepsy Ireland and research groups were         research as well as the development of an      supervision in preventing SUDEP.
involved in organising events for Brain           infrastructure to support research which
Awareness Week throughout the country.                                                                https://goo.gl/1a1r5F
                                                  includes technology, legislative changes,
For more information visit loveyourbrain.ie.      research networks and support for early
     https://goo.gl/wecMtw                        career researchers and clinicians.             FutureNeuro receive funding for
                                                  You can download the publication via the       new epilepsy treatments
                                                  link below.                                    FutureNeuro researcher, Dr. Gary Brennan
The Links between Stress and
                                                                                                 has recently received funding as part of a
Seizures                                               https://rdcu.be/biOuo                     Government investment of €10.8 million in
Professor Stafford Lightman at the University                                                    research funding.
of Bristol began investigating the links
between stress and seizures in 2014. This                                                        Dr Brennan, who is also a StAR Research
research is vital as although the association                                                    Lecturer at the Department of Physiology
between stress and seizures has been noted                                                       and Medical Physics, RCSI has received a
it is still not fully understood. Lightman’s                                                     grant of €419,472. The funding will enable
team from University of Bristol and the                                                          Dr Brennan and his team at FutureNeuro
University of Exeter placed their focus on the                                                   to study how gene regulation and protein
research of cortisol. This is a hormone that is                                                  generation could inform new treatments for
released by the body in response to stress.                                                      epilepsy.
                                                  Nocturnal Seizures with                        Meanwhile, Principal Investigator with
The research team used mathematical and
preclinical models of epilepsy so that they       Convulsions Linked to SUDEP                    FutureNeuro Professor Matthew Campbell
could examine how the hormone cortisol            A study which focused on patients with         has been awarded €125,610 in funding as
changes the electrical activity in areas of       intellectual disabilities who reside in        part of a €4.5 million investment by Science
the brain that are generally linked with          care homes found that seizures marked          Foundation Ireland.
seizures. The team was able to examine how        with convulsions that occur at night are
                                                                                                 His project will investigate whether restoring
increased levels of cortisol affected seizure     more likely to be associated with sudden
                                                                                                 the function of a gene which regulates the
activity in comparison to models without          unexpected death in epilepsy (SUDEP).
                                                                                                 blood-brain-barrier and has been found to
epilepsy.                                         The research team from Leiden University
                                                                                                 be disrupted in brain material from epilepsy
                                                  Medical Center (Netherlands) examined
The study found that increased levels                                                            patients will prevent seizure activity and
                                                  the medical records of patients who died
of cortisol alone did not play a role in                                                         thereby treat refractory epilepsy.
                                                  as a result of SUDEP from two different
increasing the occurrence of seizures.            residential care homes over a 25 year period   Funding such as the above is a positive
However they also found that exposure to a        (1987 – 2012). The investigators identified    step both for Irish research and people with
loud sound did increase the occurrence of         60 cases of SUDEP along with 198 different     epilepsy.
seizures. This indicates that other               age and residential control cases. They
components of our body’s biological                                                                   https://goo.gl/wVLiR3
                                                                                                                                                  3
Epilepsy News - Epilepsy Ireland
IMPACT OF BREXIT ON EPILEPSY MEDICATION
       SUPPLIES IN IRELAND                                               Steps taken include:
                                                                         • Re-routing supply chains to remove the transportation/
                                                                            importation via the UK
                                                                         • Ensuring that adequate reserves of AEDs are in place within
                                                                            Ireland
                                                                         • Relocating drug licences anchored in the UK to other European
                                                                            countries
                                                                         All the responses received from individual manufacturers have
                                                                         been collated on our website: https://goo.gl/hzv5Ck
                                                                         Based on feedback and conversations that we have had with
                                                                         manufacturers on this subject, we do not have any current
                                                                         concerns that there will be any disruption to the supply of AEDs
    Concerns have been raised in the media in recent months              in Ireland in the coming months. Should this change in any
    regarding possible interruptions to the supply of essential          way, we will provide updates on our website and social media
    medications in Ireland that might occur in the event of a no-        channels.
    deal Brexit. Currently, about 60% of all medications used in
    Ireland are imported from or pass through Britain.
    In January, the Taoiseach said that the Government was
    monitoring a ‘watchlist’ of drugs which could be subject to
    shortages in a no-deal Brexit. The medications on this list were
    not disclosed but reports indicate that the greatest concern is
    around specialist drugs that have for example a short shelf life
    or those that require storage at very low temperatures. These
    special categories do not include anti-epileptic drugs (AEDs).
    Tanaiste Simon Coveney later disputed the existence of any such
    ‘watchlist’.
                                                                         60% of all medications used in Ireland are imported from or pass
    The government has consistently pointed out that even if there       through Britain.
    is a no-deal Brexit, there will not be an immediate effect in
                                                                         In addition, the Department of Health, Health Products
    relation to the supply of medicines in Ireland. The government
                                                                         Regulatory Authority (HPRA) and HSE have put plans in place
    have also warned against stockpiling medications, which is
                                                                         to minimise the risks of supply interruptions. The Department
    something that could actually cause a supply disruption in itself.
                                                                         does not anticipate any immediate impact on supplies following
                                                                         Brexit. The HPRA have requested manufacturers to immediately
                                                                         engage with them if they believe that Brexit may impact on their
                                                                         ability to supply a medicine to the Irish market.
                                                                         It should however be noted that from time to time, shortages
                                                                         in a particular medication can occur for a variety of different
                                                                         reasons. Both the HPRA and the Irish Pharmacy Union report
                                                                         information on product shortages and this is monitored by
                                                                         Epilepsy Ireland on an ongoing basis. For example, we recently
                                                                         highlighted a temporary shortage of Epilim 100mg and the
                                                                         steps that are being taken to ensure patient safety. These
                                                                         temporary shortages, unrelated to Brexit may continue to occur
    An Taoiseach, Leo Varadkar, said that the Government was             from time to time and EI will continue to monitor and report on
    monitoring a ‘watchlist’ of drugs.                                   these in the coming months.
    In February, Epilepsy Ireland reached out to all the major           Further Information:
    pharmaceutical companies who supply anti-epileptic drugs             • HPRA Brexit Updates - hpra.ie/brexit
    (AEDs) in Ireland, requesting a brief update on their plans to       • Department of Health Brexit page - health.gov.ie/?s=brexit
    ensure supply of their AEDs within Ireland over the coming           • Irish Pharmaceutical Healthcare Association - www.ipha.ie
    months.
    The feedback we have received indicates that manufacturers           If you have any concerns about medication supplies, please
    have taken a range of positive steps over the past 18 months to      contact your pharmacist or get in touch with Epilepsy Ireland
    ensure that there will be no interruption to supplies of AEDs in     at 01 4557500 or your local Epilepsy Ireland office (see page 14
    the coming months, regardless of what kind of Brexit occurs.         for details).

4
Epilepsy News - Epilepsy Ireland
HSE REPORT ON PRENATAL EXPOSURE TO
       SODIUM VALPROATE 1975 – 2015
                                                                          • There is no single source of data relating to the use of valproate
                                                                             in pregnancy in Ireland. Furthermore, while some individual
                                                                             datasets might have held useful information, the inability to link
                                                                             these datasets meant that they were of little value. The analysis
                                                                             therefore relied to a large extent on international data.
                                                                          • It was not possible to take account of variation in the duration of
                                                                             valproate use during pregnancy, dosage prescribed to individual
                                                                             women or whether valproate was used as a standalone drug or in
                                                                             conjunction with other epilepsy drugs. All of these factors would
                                                                             influence the rate of disabilities.
                                                                          • No account could be taken of differences in socio-economic
                                                                             status or urban-rural area of residence. Both of these factors are
                                                                             believed to influence the rate of valproate usage.
                                                                          • The analysis is premised on the licensed prescribing of valproate
A group of parents who include Karen Keely of OACS Ireland at the            for epilepsy and bipolar disorder but does not include off-licence
very first Sodium Valproate Conference in Trinity College Dublin             prescribing e.g. for migraine.
which was co-hosted by Epilepsy Ireland in March. Also pictured
are Consultant Neurologist Prof. Colin Doherty and Senator Rose           Because of these significant limitations, the report concludes
Conway-Walsh.                                                             that the estimates should only be viewed as “a broad guide
As part of its Valproate Response Project established in 2018, the        for those tasked with planning diagnostic and management
HSE has prepared a Rapid Assessment report of the number of               services for people affected by this issue”. It continues “the true
women and children exposed to sodium valproate (Epilim) in                impact of valproate on women and children will only become
Ireland over the past 40 years.                                           apparent as data is collected prospectively…”.

Valproate can cause birth defects and problems with the                   While the estimates should be considered in light of these
development and learning of the child if their mother takes the           limitations, they are nonetheless very significant in that they
medicine during pregnancy. Children exposed to valproate in               greatly exceed both the number of confirmed FVS diagnoses
the womb are at a high risk of serious developmental disorders            made by the Department of Clinical Genetics at Crumlin
(in up to 30-40% of cases) and congenital malformations (in               Hospital (less than 50) and the 400 cases estimated by the FACS
approximately 10% of cases). The HSE’s Vaproate Response                  Forum in 2017.
Project was set up to: ensure the safe prescribing of Epilim              Despite a wide range of actions taken in recent years to raise
in women, prevent current and future harm and develop a                   awareness of this issue including direct communications from
pathway of care for diagnosis and treatment of children who               HSE to women on valproate last year, only a small percentage
have been affected by past exposure to Valproate.                         of those affected have yet been diagnosed with FVS. Epilepsy
The Rapid Assessment Report aims to provide an estimate of                Ireland and OACS Ireland continue to work closely with HSE on
the likely prevalence of specific major congenital abnormalities          delivering a comprehensive response to this issue, including
and neuro-developmental disorders associated with the drug                expanding diagnostic FVS services, putting in place a package of
(known as FVS – Foetal Valproate Syndrome). Until now, there              community supports and implementing a new Women’s Health
has been no Irish data on this but estimates are vital in planning        in Epilepsy programme.
the services and supports that affected families require. Some of         The full HSE Rapid Assessment report can be downloaded from
the report’s estimates include:                                           www.epilepsy.ie/content/valproate-epilim-guidelines.
• Between 1975 and 2015, approximately 3,126 babies were                  Videos from the recent Sodium Valproate Conference will be
   potentially exposed to valproate in utero. Of these, it is estimated   available at epilepsy.ie.
   that 873 were born between 2000 and 2015 (i.e. currently 18
   years old or younger).                                                 OACS Ireland
• From 1975 and 2015, between 153 and 341 children will                   The Organisation for Anti-Convulsant (OACS) Ireland supports
   have experienced a major congenital malformation and                   and represents families with Foetal Valproate Syndrome. If you
   up to 1,250 children will have experienced some form of                or your child has been affected by valproate exposure or if you
   neurodevelopmental delay following exposure to valproate in the        would like to know more, please contact oacsireland@gmail.
   womb.                                                                  com; Twitter - @oacsireland.
• An estimated 43 – 95 children under the age of 16 today will            For the latest updates, see www.epilepsy.ie and our social
   have experienced a major congenital malformation as a result of        media channels. If you are a woman on sodium valproate
   valproate exposure and 349 will have experienced some form of          please do not stop taking the drug unless you have been
   neurodevelopmental delay.                                              advised by a medical professional.
However, the HSE analysis is subject to a large range of
assumptions and limitations and the report must be interpreted
with these in mind. These include:
                                                                                                                                                  5
Epilepsy News - Epilepsy Ireland
KICK START YOUR CAREER WITH EPILEPSY IRELAND’S
       AWARD WINNING FREE COURSE!
    For many people with epilepsy further             What attracted you to TFS in                      some sort of experience towards that and
    education hasn’t been a viable option for         particular?                                       having confidence in my capabilities being
    a number of reasons. Epilepsy Ireland may         I felt that TFS gave me an opportunity to         instilled through the course is something
    have the solution if you’re looking for a         excel, after having felt like I was amounting     that would greatly benefit me.
    stepping stone between second level and           to nothing in every other aspect of my            Have you any tips or advice for
    further education or if you would like to         education. I was confident that there
    gain a qualification to assist you in preparing
                                                                                                        someone considering Training for
                                                      would be people there who’d understand
    for the world of work.                                                                              Success as an option for them?
                                                      my difficulties, which would allow me to
                                                                                                        Apply for your disability allowance months
    Based on campus at the Institute of               overcome them.
                                                                                                        in advance if you plan on coming to the
    Technology Sligo, Training For Success has        Living away from home was an exciting             course and aren’t receiving social welfare. I
    had over 250 young people with epilepsy           prospect. I came out to IT Sligo one day          had to wait upwards of 11 months before
    attend since its’ inception in 1998. Since        for an interview and I was shown around           I got my disability allowance. I have yet to
    that year 85% of graduates have progressed        the campus and talked about what I’d get          receive my travel card or my medical card.
    to employment or upskilled after they             from taking part in the course. There was         Fill out these forms and send them out
    completed the programme. We have had              something very unique about the chance I          straight away and don’t be discouraged if
    students from all 26 counties as the course       was being given. I felt it would be wrong to      they deny you at first.
    is only available in Sligo. Indeed, TFS is the    pass up on such an opportunity.
    only course of its kind anywhere in Europe!                                                         The course co-ordinators and lecturers here
                                                      How are you finding the                           are fantastic and are always looking out
    Students participate in a wide variety                                                              for ways to make the lives of the students
    of activities including lectures, tutorials,      experience including being
                                                      located within an Institute of                    easier. If the TFS Team sense that your head
    presentations, assignments, portfolio                                                               is starting to drop, they’ll be there to look
    development, project work, discussion             Technology?                                       for ways to make your college life easier and
    groups, one to one supported training,            Being in the IT Sligo is great. It’s a nice
                                                                                                        ensure that you make it through the course.
    goal-setting, peer learning, outdoor pursuits     campus that offers a lot. There’s a great
    and much more. All eligible students also         library and a few good shops on campus. It’s
    receive a MSLETB training allowance and an        nice to be surrounded by so many people              Recruiting NOW for
    accommodation allowance.                          going about their things, as it provides an
                                                                                                           September 2019
                                                      air of excitement.
                                                                                                           We are now recruiting for the
                                                      I get all of my drinking water from the              September 2019 intake onto our
                                                      college campus. It’s important to stay               Training for Success course.
                                                      hydrated with the medication I’m on, so I
                                                      get about 5-7 litres of water free from the IT       If you’d like to hear more about the
                                                      on a daily basis.                                    course, please contact:
                                                                                                           Honor Broderick (broderick.honor@
                                                      Have there been any unexpected                       itsligo.ie) or Maire Tansey (tansey.
                                                      or hidden benefits to the course?                    maire@itsligo.ie) or call 071 9155303.
                                                      This has been my first time living away
                                                      from home and the experience has been
                                                      invaluable. My family would have originally
                                                      come from the west of Ireland, so it feels like
                                                      I’m able to reconnect with the past by living
                                                      out here.
                                                      What do you hope to do after the
                                                      course?
                                                      I’m not sure what I’d like to do after the
                                                      course. I have thought about teaching
    Who better to tell you about the course           English as a foreign language and I have
    than one of our current students, Joey            also thought about going to university.
    Finneran (20) from Dublin.                        Completing this course would give me
    What were you doing before the                    the qualifications needed for university, so
    course?                                           having that option open to me would be            In 2013 Training for Success won the Aontas
    I was on a PLC course after I finished school,    fantastic.                                        STAR National Award for providing “an
    but I never felt that I was going to be           I have often thought about moving abroad,         outstanding contribution to adult education.
                                                                                                        L-R: David Gillick student, Paul Sharkey,
    successful on that course. After that ended,      to somewhere where the weather picks me           Epilepsy Ireland, Maire Tansey course
    I was doing nothing for five months, while        up, rather than brings me down. Having the        facilitator, Denise O’ Connell student, Honor
    waiting on my disability allowance.               experience of independent living gives me         Broderick, course manager.

6
Epilepsy News - Epilepsy Ireland
OVERCOMING MY EPILEPSY

                                                      I was chewing my chicken, when my                A more lighthearted moment occurred
                                                      vision weakened, and rapidly began to            when we tried to isolate the reason
                                                      circle. I begged my father for help. When        behind my seizure. The doctor implied
                                                      he asked me what was wrong, I mumbled            that I’d overdone it on drugs or alcohol.
                                                      something about a panic attack, as it felt       His persistence on this suggestion still
                                                      like the quickest and most logical way to        makes me laugh .At the time, I had this
                                                      explain whatever was happening.                  long, dirty, tangled hair stretching down
                                                                                                       my back, and since I wasn’t a saint for
                                                      Ironically, my biggest challenge to date,
                                                                                                       sleeping and eating, I looked far from my
                                                      my anxiety, was the last thing I referenced
                                                                                                       best.
                                                      before an even bigger one emerged.
                                                                                                       It took some convincing, but he eventually
                                                      According to my father, I fell out of my
                                                                                                       got past that possibility.
                                                      chair, but he caught me before I hit the
                                                      ground. A stranger then assisted him in          From there, the doctor pointed out that
                                                      laying me flat on the floor, and provided        one in twenty people will have a one
                                                      his jacket as a pillow.                          off seizure in their life. So, unless I had
                                                                                                       a repeat experience, then no accurate
                                                      It’s unlikely I’ll ever know who he is, or
Kevin O’Connell, a 19 year old                                                                         diagnosis could be made. Following a
                                                      that he’ll ever see this, but I extend my
journalism student, will document his                                                                  night of cautionary observation, I was sent
                                                      gratitude. I know that if brains were
epilepsy story in a series of articles for                                                             home to play the waiting game. Anxiety’s
                                                      switched, I’d have frozen.
Epilepsy News. In this piece, he talks                                                                 favourite game. However, that is irrelevant,
                                                      Once down, I started to shake, violently.        my gripes with the Irish health system are
about his first seizure.
                                                      As I type this, it’s like my bones feel the      for another blog.
Epilepsy hung over me, like a cloud of                ghosts of those violent tremors. There
depression. For so long, I was ashamed of             were several ugly side effects, such as
my condition. That was until I slayed the             saliva and leftover pieces of chicken racing
stigma, and popped the cloud, letting
                                                                                                               The only positive
                                                      from my mouth. In the few conversations
the truth of my epilepsy sprinkle over my             I’ve allowed to occur about the seizures,         from my first seizure is that
life. In this series of articles, I will share this   those are all the details I can bear to hear.     it changed my perspective
truth, starting with my very first seizure.
                                                      I woke on a stretcher, feeling groggy, and        on family.
The seizure occurred on December 15th,                being guided towards an ambulance by a
2017. Over a year before I was officially             paramedic. Behind her was the winter sky,
diagnosed as having epilepsy. It was a                dark as ever. Like her, it was beautiful, and    The only positive from my first seizure is
Thursday, and I spent the day at school,              it all felt like a dream, until my father came   that it changed my perspective on family.
being my awkward self, and suffering                  into sight, with a relieved, but horrified       Before, thanks to teenage moodiness
through what already felt like an endless             look on his face.                                and a messy past, I categorized them as
fifth year. Physically, I felt fine, so once                                                           compulsory friends rather than family.
                                                      He would have no issues with
school concluded, I decided to go for food                                                             However, the looks on my parents faces,
                                                      remembering this experience. It had been
with my father at a well known petrol                                                                  and the breathless presence of my siblings
                                                      burned into his brain. Every last second
station/food court.                                                                                    at the hospital, reacquainted me with the
                                                      of it.
This is where my memory becomes                                                                        meaning of family.
                                                      I repeatedly vomited at the hospital, from
slightly fuzzy. I remember moments, but                                                                With all that in mind, I went home, sat
                                                      a combination of the seizure itself, and the
not in concrete fashion. It feels like I was                                                           down against the wall, and sarcastically
                                                      obviously chaotic ambulance ride. Once
already floating out of consciousness, and                                                             welcomed epilepsy into my life. However,
                                                      over the initial shock, I thought “must have
just didn’t notice.                                                                                    no amount of sarcasm, worry, or hiding
                                                      been some dodgy chicken.”
I remember being in the car, and being                                                                 could have prepared me for the epilepsy
                                                      It didn’t take long the doctor to mention        journey set to follow.
asked to check if any traffic was coming
                                                      the words “seizure”. I instantly thought
from my side. The usual anxiousness and                                                                Kevin will continue to write about his
                                                      of the stigma, of those freaks who can’t
self-consciousness were present, as I                                                                  epilepsy experience in the next issue of
                                                      watch television or handle strong lights.
ordered my chicken-roll from the hot food                                                              Epilepsy News and you can also follow
                                                      Those who live an unliveable life and
counter. Most of all, I remember those last                                                            his blog on kevinskick.wordpress.com.
                                                      are an absolute burden on absolutely
few moments, before I passed out, before
                                                      everybody. As if anxiety didn’t bring
my life changed forever.
                                                      enough of a stigma and weight.

                                                                                                                                                      7
Epilepsy News - Epilepsy Ireland
THE ROLE OF NEUROSCIENCE IN TREATING EPILEPSY

                                                           The brain is a complex organ with 100      therefore directly related to this clinical
                                                           billion brain cells and 0.15 quadrillion   measurement.
                                                           connections, or synapses, between          Using these approaches my group aims
                                                           those brain cells. Remarkably, the         to carry out research that addresses
                                                           circuits of brain cells which produce      fundamental questions about epilepsy
                                                           a seizure in the whole brain can be        but also has the capacity to translate
                                                           studied at a much more basic level. For    findings into the clinic and ultimately
                                                           example, brain cells, or neurons, can be   improve the treatment of people with
                                                           grown in a petri dish and are capable      epilepsy.
                                                           of forming connections between
                                                           themselves that are similar to those       An example of this type of work is
                                                           connections in the intact brain. This      as follows. Within the brain there
                                                           cell model can be used to study seizure    is a molecule which acts to help
                                                           activity in the lab and is an important    neurons communicate with each
    Mark Cunningham is the recently                        tool to assess potential anticonvulsant    other. The molecule, glutamate, is a
    appointed Ellen Mayston Bates                          features of new drugs. Similarly, thin     neurotransmitter and when released
    Professor of Neurophysiology of                        slices (0.5-1 mm) of brain tissue can be   from the endings of one neuron it acts
    Epilepsy at Trinity College Dublin.                    prepared and kept alive in such a way      on another neuron to excite it. This
    In this piece, he explains the                         that the electrical activity of seizures   excitation causes neurons to generate
    importance of neuroscience in                          generated by these intact brain tissue     electrical signals or spikes and too much
    treating epilepsy.                                     sections can be examined. The type         glutamate can cause uncontrollable
    ‘Electricity is life but electricity is an invisible   of seizure activity seen in these slices   electrical spiking. If unchecked
    fist punching up your spine, knocking your             relates directly to seizure observed in    these spiking neurons can produce
    brains right out of your skull.’                       the intact brain and we can also study     the electrical storms that underlie
                                      Ray Robinson         this using animal models of epilepsy.      seizure generation. Normally, levels of
                                                           A variety of models of epilepsy are        glutamate are tightly regulated in the
    The quote above captures the main
                                                           available for scientists to study. These   brain however in certain conditions
    theme from Ray Robinson’s debut
                                                           range from models in which chemical        glutamate levels can become very
    novel ‘Electricity’ – an evocative and
                                                           agents, termed proconvulsants, are         high. This frequently occurs around
    unsentimental description of living
                                                           administered to the animal which           brain tumours particularly in the case
    with epilepsy. Through the narrator and
                                                           then goes on to exhibit spontaneous        of low grade gliomas. Patients with
    protagonist, Lily O’Connor, the reader
                                                           seizures. Other models include where       this form of brain tumour experience
    is given an insight into Lily’s attempts
                                                           genetic manipulations associated with      epileptic seizures and it is thought that
    to deal with her difficult to control
                                                           epilepsy have been made. We also           their seizures are due to an excess of
    seizures as they impact on her life. Lily’s
                                                           work with models of brain tumours or       glutamate. We work with slices of live
    complex wider existence is soothed by
                                                           traumatic brain injury, both conditions    human brain tissue obtained during
    a romantic liaison with an electrician – a
                                                           in which epilepsy is commonly seen.        an operation to remove this type of
    girl with abnormal electrical discharges
                                                                                                      brain tumour and we have been using
    rescued by an electrician?                             How do we study epilepsy? As               neurophysiology to record seizures in
    Can studying the abnormal electrical                   mentioned above, seizures arise from       these human brain slices and study
    discharges associated with epilepsy                    alterations in how brain cells generate    the role that glutamate is playing. Our
    provide insights that might provide                    electrical activity and communicate        work suggests that currently available
    better treatments for those living with                as networks. In order to eavesdrop         drugs, which target a particular type of
    epilepsy? This question is central to                  on this electrical activity we use an      glutamate receptor, may be better at
    the research that my laboratory at                     approach called neurophysiology.           limiting seizures associated with brain
    Trinity College Dublin hopes to address.               Neurophysiology is the study of the        tumours than other drugs presently
    Despite there being more than 30                       functions of the nervous system.           used.
    different types of seizures, all share the             This technique is directed towards
                                                           unravelling the question of operation      As captured in the quote at the
    fact that underlying the seizure is a
                                                           of individual neurons, connections         start of this article electricity plays a
    ‘misfiring’ of brain cells. This is due to
                                                           between neurons, interactions between      fundamental role in epilepsy. I aim to
    alterations in how these cells generate
                                                           groups of neuron and the emergent          carry out research which shines a light
    electrical activity and communicate
                                                           network features that arise from all       on the abnormal electrical discharges
    between each other. These electrical
                                                           these levels of function. All of the       which give rise to the epilepsy. In doing
    and chemical disturbances give rise
                                                           afore mentioned levels give rise to        so I hope to provide answers about how
    to a disorganisation of the electrical
                                                           patterns of electrical activity which      epilepsy occurs but more importantly
    signals between large numbers of brain
                                                           can be recorded by electrodes placed       use this knowledge to improve how the
    cells producing an electrical storm in
                                                           on the scalp – commonly known as           condition can be treated for the benefit
    the brain. Such uncontrolled electrical
                                                           the electroencephalogram or EEG. The       and wellbeing of patients, their carers
    storms cause a change in awareness,
                                                           activity we study in the laboratory is     and families.
    movement or sensation – a seizure.

8
Epilepsy News - Epilepsy Ireland
NEW DISEASE MODEL SHEDS LIGHT ON
      MITOCHONDRIAL EPILEPSY                                              number two types of brain cell. Diseased tissue had fewer
                                                                          inhibitory brain cells (those that reduce overall brain activity)
                                                                          and also fewer astrocytes- crucial support cells which regulate,
                                                                          amongst other things, the levels of the chemicals which brain
                                                                          cells use to communicate with each other.
                                                                          Previous studies showed that experimentally reducing
                                                                          mitochondrial function in otherwise healthy tissue was not
                                                                          enough to trigger seizures on its own. So, Mark’s team realised
                                                                          that some of the changes seen in the post-mortem tissue must
                                                                          also be an important part of the disease.
                                                                          To test this, they took small pieces of healthy brain tissue from
                                                                          rats and used drugs to block the activity of astrocytes – one of
                                                                          the cell types lost in the post-mortem tissue – at the same time
A new blog called ‘Epilepsy in English’ from academics at                 as blocking mitochondrial function. This made the pieces of
FutureNeuro aims to present epilepsy research papers in                   brain tissue start to generate seizures. Further analysis showed
plain English so that they are accessible to everyone. In                 that the previously healthy tissue also began to look like tissue
the first of a series of articles Dr. Gareth Morris discusses             with mitochondrial epilepsy. This means that the team were
mitochondrial epilepsy and a recent study by Prof Mark                    able to create the first disease model of mitochondrial epilepsy.
Cunnigham’s team on the subject.                                          This is a massively valuable research tool to try to find new
                                                                          treatments.
Our brains are hungry beasts
                                                                          With the model created, Mark’s team then used a variety
There are around 86 billion (yes, billion) electrically active            of common anti-epileptic drugs, to see if they could stop
cells in the average human brain. Each one of these cells can             mitochondrial seizures. Just like the real condition, the seizures
connect to multiple others, adding up to something like 10                in this model did not respond to most drugs. But – promisingly
trillion (yes, trillion) intricate electrical connections in the brain.   – they were stopped by one drug, sodium pentobarbital.
And this doesn’t even take into account numerous non-                     This is interesting because sodium pentobarbital effectively
electrical cells which carry out vital processes like mediating           compensates for the lost inhibitory brain cells, by mimicking
the levels of critical brain chemicals and providing structural           the action of a chemical called GABA which is normally
support. All of these biological processes use up energy and so,          released from inhibitory cells.
unsurprisingly, the energy bills in the brain start to add up.
                                                                          This finding gave the team another clue about mitochondrial
But where does this energy come from?                                     epilepsy. In a healthy brain, GABA can be made from a
Each of the cells in the brain (and also in the rest of the body)         chemical called glutamine. Usually this glutamine is produced
has its own built-in batteries known as mitochondria. The main            by astrocytes but, as the team already showed, astrocytes are
function of these tiny structures is to take energetic nutrients          damaged in mitochondrial epilepsy. In a final experiment,
and convert them into a form that the cells can use. The useful           Mark’s team added glutamine to their mitochondrial epilepsy
energy currency in the cell is a molecule called ATP and it is at         model. They showed that replenishing the lost glutamine
the heart of all biological processes that require energy.                means that the brain is able to restore GABA and stop seizure
And if it fails?                                                          activity at the same time.
Now, as with any biological process, there is a potential for             This research paper is very exciting for mitochondrial epilepsy.
mitochondria to stop functioning properly. It is estimated that           Not only does it provide us a new disease model that we can
about 1 in 4000 people have mitochondrial disease. Of these               use to better understand the disease, it also suggests new
people, about a quarter will have ‘mitochondrial epilepsy’,               treatments which might work in the condition.
where their condition leads to seizures. Mitochondrial epilepsy           Indeed, Prof Cunningham told us: ‘’We believe this work
is notoriously difficult to treat and, on top of that, we don’t           provides important insights into the mechanisms which
really know exactly how problems in the mitochondria can                  underlie mitochondrial epilepsy and provides future avenues
cause seizures in some people and not in others.                          for developing novel treatments for this condition. We
What do we know about mitochondrial epilepsy?                             are currently examining how available treatment may be
Not very much! In fact, because we know so little about                   re-purposed to treat this form of epilepsy based on the
mitochondrial epilepsy, we don’t even have a disease model –              mechanistic underpinnings we have discovered.‘
a way to mimic the disease in an experimental setting so that             We do have to be cautious at this point. Just because a drug or
we can test new drugs.                                                    a treatment works in a disease model, it does not mean that it
What does the new research show?                                          will work in real mitochondrial epilepsy. This paper provides a
They began by looking at post-mortem human brain tissue                   very strong beginning for further research into mitochondrial
from people who had mitochondrial disease. This gave                      epilepsy with the hope that one day these treatments could be
them a few clues about how the condition could lead to                    used in the clinic.
epilepsy. Along with the expected decrease in the activity of             For more articles log onto epilepsyinenglish.wordpress.com.
mitochondria, they also observed specific reductions in the

                                                                                                                                               9
Epilepsy News - Epilepsy Ireland
EPILEPSY AND EXERCISE

                                                   a check list to remind ourselves and          It is important to have both types of
                                                   most importantly remain safe with our         training in a program but remember
                                                   exercise.                                     the most important thing is that you’re
                                                   • Stay well-hydrated and eat                  keeping yourself safe.
                                                     something light before exercising.          Getting Started
                                                   • Remember, don’t continue exercising         The key is to start small and set
                                                     if you feel faint, lightheaded or           measureable and attainable goals.
                                                     nauseous.
                                                                                                 Remember, research states that 30
                                                   • Don’t overexert yourself – know your
                                                                                                 minutes of physical activity most days
                                                     limits and be kind to yourself.
                                                                                                 of the week is enough. Why not look at
                                                   • If heat or becoming overheated is a
                                                                                                 breaking this into 2 x 15 minute blocks
                                                     trigger for you, avoid studios which
                                                                                                 per day when starting off or even 3
                                                     can increase this and exercise in an
                                                                                                 blocks of 10 minutes? Try something
                                                     air-conditioned gym or at a cooler
                                                                                                 simple like a walk around your block.
                                                     time of day.
                                                                                                 Another way to get moving more is
                                                   • Let family or friends know your
                                                                                                 to just make your daily activities more
                                                     walking, jogging route or exercise
                                                                                                 active. Jog up your stairs every time you
                                                     location before you leave, and how
                                                                                                 climb them. Park in the spot furthest
                                                     long you will be out.
     Mark O’Reilly is Managing Director                                                          from the supermarket entrance or get
                                                   • Consider carrying a mobile phone,
     of FitVision, a Corporate Wellbeing                                                         off the bus a stop or two from home.
                                                     which many of us do now.
     Partner to some of Ireland and the                                                          From there, increase your activity level
                                                   • Consider wearing a medical alert
     UK’s biggest organisations. Mark is                                                         every week slightly and ensure it is
                                                     bracelet or pendant, so people can
     a former professional soccer player                                                         manageable for your current lifestyle.
                                                     easily identify you have epilepsy.
     with Bohemians here in Ireland and                                                          Aim to build sustainable habits, so opt
     also with Parramatta FC in Sydney,            Can I do things like HIIT (High               for small increases which over time lead
     Australia along with taking part              Intensity Interval Training) or               to a big change.
     regularly in Triathlons and Ironman           Resistance Training?
     events. He is an experienced                  First of all, intensity is relative to the
                                                                                                 Should I exercise if I’m tired?
     Executive Coach, Personal Trainer,                                                          This is a common question. The best
                                                   individual. For some, walking a mile
     Strength and Conditioning Coach,                                                            advice here would be to do some self-
                                                   may be high intensity, but for others
     Nutrition Coach and Physical                                                                assessment. The first step is to figure
                                                   that is just a warmup. So, it’s important
     Therapist and would like to share                                                           out why you are tired. Ask yourself the
                                                   that you do not compare yourself to
     some ways in which you can use                                                              following questions;
                                                   someone else, rather listen to your
     exercise to help with your epilepsy.          body and what intensity is right for you.     • Did you not sleep well the night
     Mark had epilepsy up until the age            Higher intensity exercise is very helpful       before?
     of 11 and he only began getting               to improve fitness, increase muscle,          • Are you doing too much at the
     involved in sports at a later age due to      and help hormone balance. It also can           minute and need some downtime?
     his condition. This article offers some       be done in a shorter amount of time           • Has your nutrition been off its regular
     tips on how you can start and most            which generally can be very appealing           pattern and could this be impacting
     importantly be safe while improving           to us all. High intensity exercise is brief     your energy?
     your health.                                  and intense. This generally comes             • Are you dehydrated and not drinking
 Epilepsy and Exercise                             in the form of interval-based cardio,           enough fluids on a regular basis?
     Exercise is good for everyone as we           bodyweight resistance training or lifting     All of these things can make us tired
     know, but there can be a stigma               weights.                                      and need to be assessed, maybe resting
     around exercise and epilepsy. People          With low intensity exercise, this means       and focusing on fixing those problem
     with epilepsy get the same health             working out for a longer length of time       areas can be a better use of your time
     benefits from exercise as individuals         at a rate that doesn’t stress the body as     that day. I hope this information can
     without epilepsy; increased stamina and       much. Think of taking a walk, yoga or a       help you in developing that regular
     strength, weight and fat loss, improved       leisurely bike ride, I would recommend        amount of activity needed to energise
     mood, reduced stress, better sleep,           1-2 sessions of low intensity work per        both body and mind.
     lower risk of illness- the list goes on and   week. Also remember just adding in            For further exercise tips and routines
     on. Before I offer some advice on how         more steps through your day has plenty        check out www.FitVision.ie.
     to get started let’s look at a few key        of health benefits so use your lunch
     points to consider in the build up to                                                       See also Epilepsy Ireland’s exercise
                                                   break to up the total steps for the day,
     embarking on your new fitness regime.                                                       section on our website : https://www.
                                                   especially now coming into spring and
                                                                                                 epilepsy.ie/content/sport
     Some of the following you will certainly      summer.
     know already but it is no harm to have

10
LEARNING TO BREATHE AGAIN

                                              heat and sometimes after even               I think my problems with epilepsy have
                                              catching my reflection in a mirror. My      improved over time after surgery but
                                              daytime seizures completely stopped,        as soon as I got the hang of breathing
                                              but nocturnal seizures became more          lightly through my nose during the day,
                                              of a problem. I did find after-effects      the next nocturnal seizure I had was so
                                              such as strong paranoia began to fade       much better. I didn’t have that copper
                                              out, but some of the effects I noticed      taste in my mouth and was able to get
                                              the next day apart from a bad memory        up out of bed. Even if I get that feeling
                                              were a throbbing headache, a dry taste      of a panic attack coming on, I still find
                                              in my mouth so that anything I ate          that as long as I keep my mouth shut
                                              tasted of copper.                           I won’t have one, but it’s had such a
                                              I’d stopped having daytime seizures,        positive effect on my nocturnal seizures
                                              but I sometimes felt an aura come on        that sometimes I have to look at the
                                              as if I was going to have one. When I       sleep pattern on my phone to decide
                                              was out for lunch one day, I picked out     whether I’ve had one or not. There have
                                              my reflection in a shop window and          been times during the day when I get
                                              got that frightening feeling of déjà vu     that aura that used to come on before
                                              that I remember having just before          I had a seizure. Now I naturally start to
                                              a seizure usually starts. It didn’t turn    concentrate on breathing in and out
Epilepsy Ireland member Jenny                                                             through my nose and the feeling goes
                                              into a seizure, but it was so long since
Snook (33) discusses an alternative                                                       away.
                                              I’d had that feeling I remember how
treatment that helped her anxiety
                                              scared I was. My heartbeat sped up and      The first thing my neurologist said
and epilepsy, which is known as ‘The
                                              I started to feel like I couldn’t breathe   when I told him was: “Do you know
Buteyko Breathing Method’.
                                              before it turned into a panic attack. I     how important it is to breathe through
Epilepsy first became a problem               know how many people think they’re          your nose?’ If I start to feel like I’m
when I was 13 and started having              having a heart attack when this feeling     going to have a panic attack, I know if
small complex partial seizures. It was        comes on. I remember a big crowd            I breathe in and out through my nose,
something I was able to handle until          standing around me on Henry St and          I might feel out of breath, but it never
I finished college when postictal             someone coming out of Clarke’s Shoes        goes to my head. I’ve also stopped
psychosis became a problem. This              with a pillow for my head.                  having seizures completely and think
continued for about 3 or 4 days                                                           there are always safe, natural methods
                                              After that I was afraid to go out for
after I had a seizure. Some of the                                                        that help, it’s just up to the person to
                                              lunch when I was in work but found
effects included insomnia, paranoia,                                                      research them and try them out.
                                              out how helpful it was to breathe
thinking that people were constantly
                                              through a paper bag when my                 Although Lamictal is still something
talking about me and hearing voices.
                                              heartbeat sped up. I began to read          I take for epilepsy that I’d never leave
Sometimes I even ended up in hospital
                                              online that lightly breathing in and out    the house without having. I think it’s
after a panic attack. My medical
                                              through your nose (Buteyko Breathing        also worth trying alternative treatments
team in Beaumont Hospital believed
                                              Method) so that you don’t breathe in        like the Buteyko Breathing Method but
neurosurgery might be able to help
                                              too much oxygen, also helped when I         only staying on it if it works well for
me.
                                              felt a panic attack coming on.              you. After all everybody’s epilepsy is
Five years after surgery, I am now                                                        unique.
working in a permanent job for the            Buteyko Breathing Method
first time as content executive for           After reading a book called “Anxiety
a management software company                 Free: Stop Worrying and Quieten Your          Epilepsy Ireland would like to
in Dublin, giving me the chance to            Mind (Featuring the Buteyko Breathing         highlight that over-breathing or
research and write my own pieces. I           Method)”, by Patrick McKeown, I tried         hyperventilation can trigger some
had the choice to work from home or           the technique of only ever breathing          seizures for certain individuals.
the office, as long as articles are written   through my nose. Apart from anxiety           Everyone’s epilepsy is unique and
on time. This really helped when              I made a link between taking in deep          before you consider any alternative
epilepsy was more of an issue. It’s still     breaths through my mouth and                  treatments such as the above please
great to know I have the choice but it’s      disrupted sleep.                              contact your GP.
even better to know it’s not a problem I      I made the link between holding
have to worry about anymore.                  my breath in my sleep and then
                                              over-breathing through my mouth
Life after surgery                            afterwards, to my daytime sleepiness,
Neurosurgery helped a lot with the
                                              problems with memory and
amount of seizures I used to have
                                              concentration, headaches and dry
during the day. Usually from tiredness,
                                              mouth.

                                                                                                                                      11
JOE SCHMIDT SUPPORTS SEIZURE AWARENESS CAMPAIGN
     FOR INTERNATIONAL EPILEPSY DAY                                                               among the Irish public over the past
                                                                                                  five years. There are over 40,000 people
                                                  International Epilepsy Day (February            with epilepsy in Ireland, so it is vital
                                                  11th) was one of the most high profile          that we all know the basics of how
                                                  days in recent years with widespread            to respond to a seizure if ever called
                                                  coverage. Epilepsy Ireland used the             upon.”
                                                  day to focus on seizure awareness with
                                                  Ireland Rugby Coach, Joe Schmidt               Epilepsy Research Explained Event
                                                  supporting this year’s campaign.               Meanwhile, Epilepsy Ireland and
                                                                                                 FutureNeuro were pleased to recently
                                                  Epilpesy Ireland CEO Peter Murphy              co-host a Public Seminar to mark
                                                  said: “We were delighted to have Joe           International Epilepsy Day. The seminar
                                                  Schmidt again supporting the need              was for people with epilepsy, their
                                                  for greater seizure awareness through          families & carers and highlighted the
                                                  the T.E.A.M. campaign. Joe’s association       latest developments in epilepsy research
                                                  with Epilepsy Ireland has been a major         in Ireland and internationally. A selection
                                                  factor in improving seizure awareness          of presentations from the event can be
                                                                                                 watched via this link: https://goo.gl/
                                                This image of Joe Schmidt was shared by
                                                thousands of people on social media to
                                                                                                 xnKqjn.
                                                mark International Epilepsy Day.

 Epilepsy Ireland Patron Rick O’Shea told his    Political activist Sile Ni Dhubhghaill spoke    Asia Enterprises were kind enough to drop
 epilepsy story on twitter.                      about her epilepsy in the Irish Independent.    sweet treats into the Epilepsy Ireland office
                                                                                                 to mark the day.

 In Brussels, Irish MEP Brian Hayes brought together his colleagues for   Over 200 people attended Epilepsy Research Explained in the Royal
 a seminar on epilepsy.                                                   College of Surgeons in Ireland.

     Online highlights                                                     Other media highlights
     Epilepsy Ireland Facebook posts reached 100,000 people                An interview with rugby player BJ Botha about his son’s
     from February 1st to February 12th.                                   epilepsy was featured in the Irish Times.
     Over 72,000 impressions on February 11th on Twitter and               The Pat Kenny Show on Newstalk featured a special report
     #EpilepsyDay was the most talked about topics on the same             on epilepsy which featured an interview with Colin Doherty,
     social media platform.                                                Lorraine Lally and Donna Kennedy.
     Famous Irish people such as Cian Healy, Minister Finian               International Epilepsy Day also enjoyed widespread regional
     McGrath and Gerry Adams tweeted their support for 		                  coverage through many media outlets (The Kerryman,
              #EpilepsyDay.                                                Evening Echo, The Connaught Tribune etc).
12
FUNDRAISING

Lunch with Joe                                  Vhi Women’s Mini Marathon                       Cape Challenge

                                                                                                Former Munster and South African Rugby
                                                The VHI Women’s Mini Marathon, takes            player BJ Botha pictured (left) during the
                                                place this June bank holiday weekend in         Cape Challenge in South Africa. BJ Botha is
                                                Dublin and is the largest Women’s event of      raising funds for Epilepsy Ireland.
                                                its kind in the world. To get involved please
                                                contact Luke Meany on 01-4557500 or             Volunteers needed!
Epilepsy Ireland’s annual fundraising           email lmeany@epilepy.ie.                        Epilepsy Ireland are looking for
lunch will be held on May 9th 2019 in Fire                                                                volunteers in the Cavan area to
Restaurant Dawson St.                                                                                     take up a church gate collection
The event will involve a drinks reception,                                                                on 20th & 21st April. Please
followed by a 3 course lunch. We will then                                                                contact Barbara on 01-4557500.
be having a panel discussion where we will
chat with Irish rugby coach Joe Schmidt
and World Cup winner, and former                                                                           Cork Marathon
Munster rugby player BJ Botha. Tables are                                                                  The 2019 Cork City Marathon,
now sold out. If you or your organisation                                                                  Half Marathon & Team Relay will
would like to donate a prize for the event                                                                 take place on Sunday 2nd June.
please contact Luke Meany on 01-4557500                                                                    Entry is now open. Log onto
or email lmeany@epilepy.ie.                                                                                www.epilepsy.ie/content/get-
                                                                                                           involved for more details.

   PURPLE DAY

Landmark Buildings around Ireland turn Purple in Support              around the country to ‘turn purple’ to raise awareness of epilepsy
of Epilepsy Awareness                                                 on March 26th. Almost 40 well known Irish buildings showed
Epilepsy Ireland with the support of Joe Schmidt promoted             their support for the cause including the Convention Centre ,
Purple Day this year by encouraging buildings and businesses          UCC and Kilkenny Castle.

Joe Schmidt shows his support for Purple Day.                          The Convention Centre goes Purple for epilepsy awareness.

                                                                                                                                              13
REGIONAL EVENTS
                                                                        Carmelite Community Centre, 56
     REGIONAL OFFICES                 KERRY                             Aungier Street, Dublin 2          NORTH EAST
                                                                        10.30am – 1.30pm
 Cork                                16/04/2019                         Commencing Wednesday May 1st     21/05/2019
 Tel: 021 – 4274774                  Kerry: Family Morning              for 6 Wednesday mornings         Monaghan; Seminar for
 Niamh Jones, Loretta Kennedy        Venue: TBC                                                          Teachers and SNAs
 njones@epilepsy.ie                  10.30am-1pm                         23/05/2019                      Glencarn Hotel, Monaghan
 lkennedy@epilepsy.ie                                                   Support, Information & Toolkit   6.00 – 9.00pm
                                     28/05/2019                         Group for People recently
 East                                                                                                    For more information or to
                                     Tralee: Support Group for          diagnosed with Epilepsy or
 Tel: 01 - 4557500                                                                                       register please contact Mary at
                                     Parents of children with           Parents of Children recently
 Edel Curran, Carina Fitzgerald                                                                          the Dundalk office
                                     epilepsy                           diagnosed with Epilepsy –
 ecurran@epilepsy.ie                 The Manor West Hotel, Tralee                                        23/05/2019
 cfitzgerald@epilepsy.ie                                                Morning Group
                                     10am.                              Thursday May 23rd 2019 at        Navan: Parents Buccal
 North-East                                                             Carmelite Community Centre, 56   Midazolam information session
                                     Killarney: Support group for
 Tel: 042 - 9337585                                                     Aungier Street, Dublin 2.        Navan Education Centre, Navan,
                                     people with epilepsy
 Mary Baker                                                             10am – 1pm                       Co. Meath
                                     KDYS centre Killarney
 mbaker@epilepsy.ie                                                     For more information or to       10.00 – 1.00
                                     Wednesday 10th April
 Midlands                                                               register please contact Carina   For more information or to
                                     Wednesday 8th May
 Tel 057 9346790                                                        or Edel on 01-4557500 or email   register please contact Mary at
                                     Wednesday 12th June
 Cliona Molloy                                                          cfitzgerald@epilepsy.ie          the Dundalk office
                                     10.30am
 cmolloy@epilepsy.ie
                                     20/05/2019                                                           NORTH WEST
 South-East
 Tel: 0567789904
                                     Tralee: Information Evening for     MID WEST
                                     Teachers and School Staff                                           09/04/2019
 Miriam Gray
                                     The Education centre, IT Tralee    11/04/2019                       Sligo Outreach Service
 mgray@epilepsy.ie
                                     4.30pm                             Limerick: Nurse Talk for women   Sligo Office
 Mid-West                                                               with Epilepsy
 Tel: 061 - 313773                   Tralee: Outreach Appointments                                       10.30 - 12.30
                                                                        Limerick Education Centre        By Appointment only contact
 Veronica Bon                        available each Monday at Kerry
                                                                        6pm - 9pm                        Agnes
 vbon@epilepsy.ie                    university hospital or in Tralee
                                     Further information please         02/05/2019                       21/05/2019
 Kerry
                                     contact Kathryn                    Parents information Session      Sligo: Information Session
 Tel: 064 6630301
                                                                        and Buccal Midazolam             for Parents, Families & Carers.
 Kathryn Foley
                                      WEST                              Demonstration                    Administration of Buccal
 kfoley@epilepsy.ie
                                                                        Clare Education Centre           Midazolam
 West
 Tel: 091-587640                     09/04/2019                         22/05/2019                       St Michaels Family Life Centre,
 Edel Killarney                      Galway Epilepsy Nurse              Limerick: Parents Inner-wise     Church Hill, Sligo
 ekillarney@epilepsy.ie              Presentation                       Session                          6.30pm to 8pm.
                                     Maldron Hotel, Oranmore, Galway    Radisson Hotel Limerick          Please call Agnes to confirm your
 North-West                          11am - 1pm                                                          attendance:
 Tel: 074 9168725
                                                                         CORK                            29/05/2019
 Agnes Mooney                         DUBLIN                                                             Letterkenny: Hospital Outreach
 amooney@epilepsy.ie
                                                                        29/05/2019                       Service
                                     08/04/2019                         Cork: Support Group for          Out Patients, Scally House
                                     Dublin: Support, Information       Parents of Children with         Letterkenny
     SOUTH EAST                      & Toolkit Group for People         Epilepsy                         Agnes will be available to meet
                                     recently diagnosed with            Bishopstown GAA Club             with you at The Neurology Clinic
 02/05/2019                          Epilepsy or Parents of Children    7.30pm
 Wexford: Epilepsy Awareness         recently diagnosed with
 presentations                       Epilepsy                           22/05/2019
 Maldron Hotel Wexford               Carmelite Community Centre, 56     Cork: National Epilepsy Week        Epilepsy
                                                                        Information Stand
                                                                                                            Ireland
 2pm - 3pm - For Professionals:      Aungier Street, Dublin 2
 “On Epilepsy management with        6pm – 9pm                          Cork University Hospital
 the focus on recognising and
 responding to Seizures”
                                     24/04/2019
                                     Arklow: Outreach Service
                                                                        10am - 4pm
                                                                                                            National
 2.30pm - 4.30pm - For People with
 Epilepsy: “Epilepsy and Seizures”
                                     Health Centre, Castle PARK,         MIDLANDS                           Conference
                                     Arklow, Co. Wicklow
 Guest Speaker: Cora Flynn           By appointment only contact        24/05/2019                          SAVE THE DATE
 Advance Nurse Practitioner for St   Carina                             Portlaoise: Information Stand
 Vincent’s Hospital Dublin                                                                                  Saturday 28th
                                                                        Portlaoise Hospital
                                     01/05/2019                         10am - 2pm                          September in the
 21/05/2019                          Dublin: STEPS (Support and
 Waterford Information Stand                                                                                Radisson Blu Hotel,
                                     Training in Epilepsy Self-                                             Little Island, Cork.
 University Hospital Waterford       Management) for People
 10am - 3pm                          with Epilepsy for 6 Wednesday                                          More details to follow in
                                     Mornings                                                               Summer issue.

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