Issue 50 - Epilepsy Ireland

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epilepsy news
Brainwave The Irish Epilepsy Association
Issue 50 Summer 2010
The Young Adult with Epilepsy
Speakers and guests at the recent public conference in Dublin
In this issue:
National Epilepsy Week in your area
Epilepsy Film Night
Brainwave launches new education pack for nurses
Progress on generic substitution in epilepsy
Going to college – practical advice and tips
Contents
Note from the Editor
As we enter the summer
months, thereʼs certainly no
shortage of Brainwave events to
look forward to. To mark
National Epilepsy Week (May
17th-23rd), we are hosting an
Epilepsy Film Night in Dublin
with a full length feature film
and three short films, all with an
epilepsy theme on show.
National Epilepsy Week will also
see the launch of our
information pack for nurses.
20,000 nurses will receive the
pack over the summer months.
By improving health professionalsʼ understanding of
epilepsy, we are confident that
the new resource will help
improve the standard of care for
people with epilepsy in Ireland.
In June, Training For Success
will hold its annual open day in
the Institute of Technology, Sligo
in preparation for the 2010/2011
term. Work is also underway for
another SUDEP seminar this
summer and of course for the
annual conference, being held
in Dublin this October.
Meanwhile, fundraising events
are also happening all over the
country to help maintain our
services in these difficult times
– the annual Ball run in Cork, a
monster BBQ in Tullamore, an
art auction in Clare, a table quiz
and of course the minimarathon in Dublin. Thereʼs
plenty more too! See Page 12
for all the news. We hope that
you can support (or organise!) a
Brainwave fundraiser
happening in your area this
summer.
Best wishes from all at
Brainwave.
Brainwave
The Irish
Epilepsy Association
249 Crumlin Road,
Dublin 12
Tel: 01 4557500
Fax: 01 4557013
Email: [email protected]
Web: www.epilepsy.ie
Registered Charity Number: 6170
www.epilepsy.ie
2. Brainwave members receive carers
award
3. Epilepsy Film Night
4. Making a Difference: Epilepsy & Me by
Rachel Ashe
6. Epilepsy drugs to be excluded from
generic substitution plans
7. Pulitzer Prize for epilepsy-themed novel
Dublin Brain Bank
8. Epilepsy & The Young Adult: Review
Training For Success open day
9. Brainwave to launch new Nurses
Information pack
10. Innovation in Irish epilepsy care recognised
11. Going to college: Part 2
12. Fundraising news and events
14. News and events from around the country
16. European Conference on Epilepsy &
Society
Brainwave members honoured
at Caring For Carers conference
Congratulations to
Francis and Kathleen
Cunningham from
Galway who were
recently honoured with a
special award
announced at the Caring
for Carers Ireland (CCI)
conference.
The husband and wife
team who are in the unique position of being
registered carers for each other, are long-time
members and volunteers of Brainwave.
Francis, who works three days a week in the
Rehab Recycling unit in Galway, has had
epilepsy since he was a child and
experiences regular seizures while Kathleen
is in a wheelchair due to a long-term disability.
Francis provides the physical assistance
required by Kathleen, who in turn helps
Francis cope with his seizures, while being
prepared to call for medical help if required.
The couple first met each other on a Rehab
bus in 1991 and have been happily married
for 18 years.
Speaking to the local
media, Kathleen and
Francis praised CCI,
Brainwave The Irish
Epilepsy
Association
and the Irish Wheelchair
Association, along with
medical staff at Galway's
hospitals.
"We both share the
workload and we have each other”, said
Kathleen. “We are particularly grateful to
Brainwave for all they have done to help,
including putting us in touch with CCI a few
years ago. Brainwave does a lot of valuable
work in the Galway area.”
Kathleen also praises CCI for their monthly
support group which provides computer
training, respite breaks, assertiveness
courses and other activities for carers in the
Galway area. For more information, contact
co-ordinator Brid Lynch at 093 25362.
Congratulations to you both from all at
Brainwave!
Front Cover Main Photo
Pictured at the Brainwave / RCPI Public meeting during Brain Awareness Week, "Epilepsy and The
Young Adult: Looking Forward to the Future" are: (standing l-r) Dr Norman Delanty, Consultant
Neurologist, Beaumont Hospital; Dr. John Kirker, Brainwave President; Dr Diarmuid O'Shea RCPI Vice
President of Education and Professional Development; Ms Maire White,
Clinical Nurse Specialist in Epilepsy, Beaumont; Mr Paul Sharkey,
Training & Communications Manager, Brainwave; Dr Niall Pender,
Principal Clinical Neuropsychologist, Beaumont; Dr Dan Costello,
Consultant Neurologist, CUH. Seated (l-r) Ms Sharon Ni Bheolain,
Broadcaster & Chair of the meeting; Ms Emma Beamish, Brainwave
member & Irish International cricketer.
Contact Corner
A Brainwave member asks: “I am being considered for surgery and wish to make contact
with others in a similar position.”
To get in touch, please email [email protected] for contact details
3
3
Making a Difference: Epilepsy & Me
By Rachel Ashe,
Brainwave Member, Dublin
I was just gone 18 when I was diagnosed with
epilepsy. My first seizure happened on the
very first day of a three-month holiday to
Jersey; I had no idea what was going on. I
remember suddenly being in a bedroom
when the last thing I remembered of that night
was being out with friends, safe and happy.
I was terrified as there was a strange man in
the room with me. I had my jeans in my
hands and fear exploded through me. I had
no idea who he was or what was going on.
This stranger turned out to be my boyfriend
at the time who had come to the hospital with
me. I was kept in for five days in order to get
all the tests I needed but they couldnʼt really
identify the issue. They arranged an
appointment for me with an Irish neurologist
and I decided that the best thing to do was to
go home. That was until I bought a ticket to
Amsterdam and went to do a bit of travelling.
“Itʼs just a seizure…I wonʼt let it stop me
doing anything!!” Ohhh how wrong I was!
“
I’d barely heard of
epilepsy before but I
felt like the word
was stamped on my
forehead and
everyone would look
at me like I had an
incurable disease”
”
After a summer of travelling I went for the
appointment as soon as I got home. The
neurologist told me I had epilepsy. It was
the strangest thing anyone had ever said to
me. I was in total shock; I couldn't think of
what questions I needed to ask and I left the
office with a prescription. I felt like the word
“epilepsy” was stamped onto my forehead
and everyone knew that I had it and they
would look at me like I had an incurable
disease. To be honest, I didnʼt know much
about it, Iʼd barely heard of epilepsy before.
It took me a long time to be able to tell
people. At first, tonic-clonic seizures only
happened about once every six months but
as Iʼve gotten older they seem to be about
every six weeks, the last one a week ago
from the date of writing this.
www.epilepsy.ie
Life went down in a black
spiral. I found it very
difficult to accept the fact
that I had to change my
life and the way I lived in
order to have some
semblance of control
over the seizures. For a
long time I kept drinking,
stayed up late and didn't
get much rest. As the
seizures became more
frequent, I began to
question my ability to do
my job. I was working in
marketing and events
and having to work long
days
coupled
with
seizures was more than I
could handle at the time.
So I left my job and
Rachel (right) with friend Lisa on New Years Eve 2009
stayed off work for three
I pulled the drips out of my arm and emailed
months – I was still quite sick at this time so
Paul to say I was left on my own and had no
it wasnʼt as fun and relaxing as it may
money, memory or phone; could he please
sound!
help me. Then Lisa popped her head
During these few months off work, my
around the corner and I was so happy I
medication was changed. The new drug did
cried. We eventually went to the airport and
not suit me at all. At one point I actually
managed to miss another plane but they
thought I was going crazy. I was very
were very good and transferred us to the
paranoid and because of the seizures, I
next available flight. I kept forgetting I was
was so sore that I found it difficult to get out
very bruised and wondered why people
of bed. The most vivid memory is of my
were staring! How rude!!
friend Lisa sitting on the end of my bed with
One day I suddenly burst into tears (actually,
my boyfriend Paul - they gave each other a
more like hysterics) and asked Lisa if I was
look which I saw and asked what was going
going crazy. I honestly thought I was but
on. Part of the paranoia I guess. They told
Lisa assured me I was not crazy and I
me that we had the same conversation
needed to start taking control of my life
several times in a half hour. My memory
again. I felt like it was another chapter of my
was so bad I couldn't remember people
life closed and I was ready to move on.
coming to visit me or even if I had eaten or
talked to friends. It was so scary but it made
me realise that I had to get out of the spiral.
A particularly bad episode happened when I
had four tonic-clonic seizures in about 24
hours while on holidays. I had hit off so
many things that people stared a lot! I
missed my plane home several times.
When I got to the hospital with Lisa, I had
my third seizure. Lisa had just had enough;
I fell flat on my face and she just pushed
every emergency button that she could find.
Doctors and nurses came rushing in to the
room in hazmat suits as it was around the
time of the swine flu epidemic. I thought
they were aliens and I fought for my life,
pulling all the drips and oxygen away from
me. They held me down and I really hoped
the aliens wouldnʼt take me away from Lisa.
The next morning I woke up on my own with
no wallet, bag or phone. I had nothing but a
hospital gown. I had to find a computer, so
“
I suddenly burst into
tears and asked Lisa
if I was going crazy.
She told me I wasn’t
crazy but that I
needed to start
taking control of my
life again
”
I didn't have much confidence while looking
for a job. I felt I mightn't be able to handle
the stress and tiredness but I really like my
work and decided to slip it into the interview
about having epilepsy. It didn't stop them
Making a Difference: Epilepsy & Me
offering me the job and they understand
when I have to take time off work. It just
gave me confidence to feel like I can
achieve anything I put my mind to. When I
was younger I promised myself I would take
whatever life gave me and run with it and
thatʼs what I started to do.
I received my Honours business degree
and then after a year break went on to do
my Masters in Marketing. Don't get me
wrong - it was tough but I am so proud of
myself for keeping going when there were a
lot of times I felt like just giving it all up.
It was only about eight months ago that I
gave up alcohol. It was the best thing I
could do for myself. At the start I really
missed it but after a couple of months
realised that I am the same person and
didn't need alcohol to be me.
A few weeks before Christmas last year I
had a seizure. I was off work for about a
week and was again struggling with the
emotional side of seizures so I decided to
have a look online on Facebook for a group
of people who were going through the same
thing. As much as Paul is there for me, I
really think that unless you have gone
through it people don't really understand.
Itʼs so difficult to explain what its like or why
I feel like I do. I couldn't find a suitable
Facebook group so I stubbornly decided to
set up my own group called Epilepsy
Ireland.
I was extremely nervous that no one would
join but it gave me focus on the positive side
of life and made me believe that I could
make a difference. People started to join
and talk about how they found medication;
their epilepsy stories and experiences,
asking questions etc. Parents of children
who have seizures and those who have
joined have been able to provide a support
structure for each other; myself included.
The group is more about sharing
experiences and creating a support
structure rather than the technical aspects
of epilepsy.
Rachel and Paul at Malahide Marina
I had a lot of support from family who all
take care of me when I need help. Paul is
always there for me through seizures but
what I find the hardest is the emotional
stress afterwards. The first day of a tonicclonic seizure, Iʼm quite happy and normally
a bit sore and hyper – Iʼm ready for
anything! The following day Iʼm quite tired
but again happy. On the third day I just
can't see the bright side of life and get upset
over the fact Iʼve had another one, asking
myself questions like “did I do anything to
bring this one on?”, “are the tablets not
working?” and “what else I can do??” I
used to promise myself that I would NOT
have another seizure, then it would happen
again and I would be devastated and angry
with myself for letting myself and everyone
else down.
The most valuable lesson Iʼve learned from
the site is perspective. There are people on
the site who struggle with everyday life, for
example not being able to work, walk, drive
a car or travel by themselves. There are
people who are having over 40 seizures
throughout the night. Perspective made me
realise how lucky I am. I have so many
people who care for me. I have the full
support of family and friends and I can work
and travel by myself.
The next seizure I had was about three weeks
later in my hairdressers. The ambulance was
called and I went to the hospital. I had to wait
for five hours and then I had a seizure in the
emergency room. I got seen pretty quickly
after that! I went online and posted on the
facebook group and was overwhelmed with
the amount of messages members sent me; it
gave me such a boost and honestly made me
realise how lucky I am.
I heard about the Flora Mini Marathon
recently and decided I was going to do it. I
used Facebook to recruit some friends to
walk it with me. There are now six of us
“
I was nervous that no
one would join the
facebook group but it
gave me focus on the
positive side of life
and made me believe
that I could make a
difference
”
walking it and getting as much sponsorship
for Brainwave as we possibly can. The
support Iʼm getting is unbelievable. I
decided to hold a fundraiser in the local
GAA club, a bingo night. There are over 15
companies who have given me spot prizes
to raffle off. Iʼm still a bit worried about who'll
turn up but hope it'll raise some money every little helps and Brainwave is certainly
a charity worth making the extra effort for.
I'm so excited about the marathon and the
whole day, it gives me confidence and focus
on everything Iʼm doing to help make a
difference. Everyone can make a difference
no matter how small as long as you have
faith in yourself.
Simply login to www.facebook.com and
search for Epilepsy Ireland
Finding Epilepsy Ireland on Facebook
If you would like to have your own
story featured in Epilepsy News,
please get in touch with Peter at 01
455 7500 or email [email protected]
for further information.
5
Epilepsy drugs to be excluded from the proposed new system
of reference pricing and generic substitution
In the last issue of Epilepsy
News, we reported on moves
both at home and abroad
towards substituting branded
medications
with
their
(cheaper) generic equivalents
once the patent on the original
branded drug has expired.
The article outlined the Irish
governmentʼs support for this
“generic substitution” and
discussed the special position
of epilepsy in this regard.
Brainwave has been vocal for
many years in campaigning
for epilepsy to be excluded
from any new system of
generic substitution in Ireland.
We have worked to increase
awareness of international
evidence
showing
that
generic substitution can lead to the
recurrence of seizures in some people
whose epilepsy was otherwise controlled.
We are delighted to report that our ongoing
work in this area has been rewarded. In
March Brainwave was invited to a meeting
organised jointly by the Department of
Health & Children and the HSE and
received assurances that epilepsy
medications would be specifically exempted
from the proposed system of reference
pricing and generic substitution under
consideration. Mike Glynn and Peter
Murphy attended on behalf of Brainwave.
The announcement was made by Mr Shaun
Flanagan, Chief Pharmacist at the HSEʼs
National Hospitals Office at a meeting
between the Minister's Reference Pricing
Working Group and patient representatives.
Mr Flanagan told the meeting that all the
available evidence supported such an
exclusion for epilepsy.
Brainwave warmly welcomes the decision
of the working group in relation to epilepsy
medications.
Meanwhile, leading experts in the UK have
stepped up their campaign against generic
substitution in epilepsy. On March 18, ten
UK epileptologists published a letter in the
Daily Telegraph calling on the UK
Department of Health to permanently
exclude anti-epileptic drugs from plans for
generic substitution there. Included in this
group were some of the worldʼs top opinion
leaders in epilepsy such as Profs. John
Duncan, Ley Sander, Simon Shorvon, Mike
Kerr and Helen Cross.
www.epilepsy.ie
Breakthrough seizures can be
physiologically and psychologically
devastating for someone who has
been seizure free, often leading to
loss of confidence and anxiety as
well as to the individual not being
able to drive again.
Thankfully, the HSEʼs commitment
to excluding epilepsy medications
from the new system will mean
that people with epilepsy will not
now be endangered as a result of
having their current medication
automatically switched for a
generic version.
The letter stated that “epilepsy is different
from many other conditions, in that a single
seizure has very serious consequences...
The doses of epilepsy medications are
titrated carefully for each individual, to give
the best control and the minimum of
adverse effects. Any variation in the
manufacture and composition of a tablet or
capsule introduces another factor that may
disturb the balance and result in an
otherwise avoidable seizure or adverse
effects, even if the active ingredient is not
changed.”
Speaking to the Irish Medical Times
recently on the subject, Dr Norman Delanty,
Consultant Neurologist at Beaumont
Hospital agreed with these concerns. “If
generic substitution was brought in, even if
there is a 10 per cent lower bioavailability,
that could put the patient at risk of epileptic
seizures”.
Bioavailability is the degree to which a drug
becomes available at the intended site in
the body after it has been taken by the
patient. There are often only small
differences in bioavailability between the
original branded drug and the generic. In
most other conditions and illnesses, the
difference is so small as not to matter. Antiepilepsy drugs however, have a narrow
therapeutic window and a critical dose,
which means that a small difference can
lead to problems. If the generic version of
the drug has 10 per cent greater absorption
than the original drug, it has the potential to
produce a toxic effect. If the generic has 10
per cent less absorption, it has the potential
to affect seizure control and the patient may
experience breakthrough seizures.
The recent meeting of the HSE,
Department of Health and patient
representatives also heard that a
significant PR campaign will be
launched to inform the public about
reference pricing and generic substitution
once details of the system have been
agreed.
A new system has been deemed necessary
to promote price competition and reduce
the costs of medication for both the State
and patients. Currently, there are far less
generic medications prescribed in Ireland
compared to the UK and other European
countries, meaning that we are spending far
more on pharmaceuticals than other
countries. Reducing this spend is a priority
for the government and generic substitution
is one of the main means of controlling the
costs.
The HSE/ DOHC working group will deliver
a full report to the Minister later in the year.
Brainwave will continue to keep our
members
informed
of
future
developments.
Important Note:
As outlined in the last issue, we would
like to re-iterate that the prescribing of
generic epilepsy drugs per se is not a
problem when prescribed for new
patients and presuming that there will
continue to be an adequate supply of the
generic available in the long term. The
problem exists only when an individual’s
epilepsy medication is switched.
Switching can be a problem not only
when it takes place from the brand to the
generic, but also vice-versa or even
between two different generic versions.
Research Feature: The Dublin Brain Bank
and information forms along
with instructions on how to fill
them out so that all the
necessary arrangements can
be organised.
After the death of a donor, a
post-mortem
examination
limited to study of the
nervous system is carried
out, preferably within 24
hours. The brain tissue is
recovered
during
this
examination and is stored
appropriately for further use.
Pictured at the launch of the Dublin Brain Bank in 2008 are The donorʼs body is usually
broadcaster Jimmy Magee (right) and Prof. Michael Farrell,
released to the undertaker on
Consultant Neuropathologist in Beaumont Hospital and Director of
the same day so that funeral
the Dublin Brain Bank.
arrangements should not be
The objective of the Dublin Brain Bank
delayed. All costs relating to transport for
(DBB) is to facilitate brain donation through
donation are borne by the Brain Bank.
an ethically approved programme of
The decision to donate should be
informed consent and to provide Irish
considered carefully and time should be
clinical and basic neuroscience researchers
taken to consider all issues involved.
with access to brain tissue for the conduct
Donation consent can be withdrawn at any
of research into neurological disorders. The
time without personal consequences and
DBB was officially launched at the Royal
without having to give a reason.
College of Surgeons in Irelandʼs Smurfit
Building in Beaumont Hospital, Dublin in
Donation to the DBB is strictly confidential.
October 2008.
All donor details are entered onto a secure
database. Confidentiality is maintained by
By encouraging brain donation, the DDB
coding all entries. Information will only be
offers individuals an opportunity to support
passed onto other health care professionals
medical science in a very tangible manner.
with the donorʼs consent. Data collected by
Donation of precious brain tissue facilitates
the brain bank will only be analysed by
research studies that will provide valuable
approved members of neurological
information on the diagnosis and treatment
research groups. When a donation is
of many common neurological diseases
received, the tissue is given a unique
including epilepsy, which ultimately will lead
identification number and stored securely.
to increased quality of life for patients.
Since the launch of the brain bank in 2008,
DBB also hopes to encourage people
almost 50 donors with various central
without neurological disorders to register in
nervous system diseases have registered
their donor scheme. Human tissue, both
and the DBB has received 7 donations.
neurologically diseased and normal, is
The development of the Brain Bank will
essential for neuroscience research, in
pave the way for a more concentrated and
particular research which is involved in
organised approach to human tissue
understanding the molecular processes
banking which will facilitate neuroscience
responsible for epilepsy.
research. It is through the courage and
Becoming a donor requires that consent be
generosity of donors and their families that
given by individual donors. The consent is
will ultimately lead to the benefit of others
given in the full knowledge of the immediate
with epilepsy in the future.
next-of-kin. During life, an “intention to
The Brain Bank is open for donations from
donate” form is completed and immediately
all over Ireland. Anyone with an interest in
after death, the final consent is given by the
finding out more can contact:
immediate next of kin who has already been
witness to the intention to donate. It is
Ms. Niamh Kernan, Project Coordinator,
important to make the necessary
Dublin Brain Bank, Neuropathology Dept,
arrangements well in advance so that family
Beaumont Hospital, Dublin 9.
members have time to discuss this very
Phone: 01 8092706. 24-hr messaging
important issue. This can be arranged by
service: 01 7974757
contacting the project coordinator (details
E-mail: [email protected]
below). You will receive the relevant consent
Pulitzer Prize for
epilepsy-themed
novel
Paul Harding has won the 2010
Pulitzer Prize for fiction for his
debut novel Tinkers. The book
has been described as "a
powerful celebration of life in
which a New England father
and son, through suffering and
joy, transcend their imprisoning
lives and offer new ways of
perceiving the world and
mortality”.
The novel has received a
starred review in Publishers
Weekly and they commented:
"Harding's outstanding debut
unfurls the history and final
thoughts of a dying grandfather
surrounded by his family in his
New England home. George
Washington Crosby repairs
clocks for a living and on his
deathbed revisits his turbulent
childhood as the oldest son of a
smalltime traveling salesman
[with epilepsy]. The descriptions
of the father's epilepsy and the
cold halo of chemical electricity
that encircled him immediately
before he was struck by a full
seizure are stunning, and the
household's sadness permeates
the narrative as George returns
to more melancholy scenes".
In a recent interview, the author
revealed the background to the
story. “My great-grandfather did
have epilepsy and left the family
when he found out that my
great-grandmother intended to
have him committed to an
asylum. But that is all my
grandfather ever told me about
it… I tried to keep the epilepsy
pretty clinical and the character
himself a mystic”.
7
Training For Success
Open Day
Monday June 21st
Institute of Technology Sligo
“As a result of my participation in TFS I
managed to get a full time job. I recently
passed my driving test. I feel that TFS
gave me the belief to go out and do it. I
have learned a lot about epilepsy and
how different people deal with living with
the condition. I found the TFS tutors very
helpful and encouraging”. Vincent – ex
TFS Student
Brainwave/RCPI Public Lecture marks
Brain Awareness Week
As part of activities for Brain Awareness
Week, Brainwave and The Royal College of
Physicians of Ireland (RCPI) came together
to organise a public meeting on epilepsy
called “The Young Adult with Epilepsy:
Looking Forward to the Future”.
Training For Success (TFS), Brainwaveʼs
pre-employment training programme at
the Institute of Technology Sligo will hold
an open day on Monday June 21st. TFS is
a one year course designed specifically
for young people with epilepsy to assist
them develop the necessary skills and
attitudes in order that they may make a
successful transition from dependency to
adult independence and full integration
into full or part-time employment;
mainstream training and education.
The open day is an opportunity for
potential candidates to visit the Institute
of Technology, Sligo and meet staff and
current course students. An overview of
the programme will be given including
payment entitlements and details of how
to source accommodation in Sligo.
If you have epilepsy and answer yes to
any of these questions, Training For
Success is for you:
· Are you unsure where you want to go
with your career?
· Are you wondering what to do with the
future?
· Do you need to become independent?
· Are you nervous about leaving home?
· Do you want to earn as you learn?
RTE broadcaster Sharon Ni Bheolain, who
chaired the meeting
“I would most definitely recommend this
course to other people as the Training for
Success course has already helped me
a lot in the first few months. My self
confidence has grown a lot and there is
great help available to everyone on the
course. You get a chance that you may
have thought you would never get again
and a good qualification.” Stephen Current TFS Student
www.epilepsy.ie
Maire White, Clinical Nurse Specialist in
Epilepsy at Beaumont Hospital offered a
comprehensive range of practical advice for
young adults with epilepsy including coping
with an epilepsy diagnosis, safety issues
around seizures, going to college, driving
restrictions and how to use rescue
medications.
Dr Norman Delanty, Director of the
Epilepsy Programme at Beaumont
Hospital had the task of explaining current
and new treatments for epilepsy, including
AEDs, Vagal nerve stimulation and
surgery. He also looked at the issue of side
effects and explained why there was still a
need for new and better treatments. Dr
Delanty also gave an overview of Irish
epilepsy research. He said that while lots
of good work is being done in Ireland,
there are still significant access and
resource problems.
The meeting also formed part of the RCPIʼs
Promoting a Healthy Nation Public Meeting
Series and was held in Dublin on March 10th.
Chaired by RTEʼs Sharon Ni Bheolain, the
meeting specifically focused on the challenge
young adults face in managing their condition
as they move from adolescence to
adulthood. Over 150 people attended and
220 more tuned in to the live webcast from
all parts of Ireland and even abroad.
Places are limited to 14 and as they are
filling up rapidly, anyone interested in
considering TFS as an option should
make contact with the TFS office and put
their name down for interview and a visit
on the open day.
For further information about TFS and
the open day, contact Honor or Leonard
at 071 9155303. Training For Success is
run in partnership with the Institute of
Technology, Sligo and is funded by FAS.
of advice: Donʼt let epilepsy define who or
what you are and donʼt endure difficulties in
silence.
Enjoying a cup of tea and an apple before the
meeting!
Emma Beamish, Brainwave member & Irish
International cricketer spoke about her own
personal epilepsy journey with all the ups
and downs that has entailed. Emmaʼs
positive messages really struck a chord with
the large audience.
Dr Dan Costello, Cork University Hospital with
Brainwave President, Dr. John Kirker.
Dr. Dan Costello, newly appointed
Consultant Neurologist at Cork University
Hospital spoke on the transition to
independence and self care for young
adults with epilepsy. Dr Costello outlined
the possible impact epilepsy can have on
oneʼs life and made suggestions about how
this impact can be minimised. He explained
that developing epilepsy as a young adult
can be more difficult to cope with than
becoming an adult with epilepsy that began
in childhood. He finished with two nuggets
The speakers were then joined by Dr Niall
Pender,
Principal
Clinical
Neuropsychologist at Beaumont and Paul
Sharkey, Training & Communications
Manager with Brainwave for an invigorating,
lively Q&A session which could have lasted
for hours if time permitted!
Brainwave would like to thank RCPI for their
invaluable contribution to what was an
excellent information evening. We would
also like to thank all the speakers and the
Chair for their time and preparation which
make the event such a success.
Note: The speakersʼ presentations are now
available on epilepsy.ie
Photo
Review
Brainwave2009
to launch
Nurses
Information Pack
Leaflets
• About Epilepsy
Epilepsy overview including diagnosis;
photosensitivity; Non-Epileptic Attack
Disorder; SUDEP and Status Epilepticus
• Epilepsy and Paediatrics
Epilepsy issues relating to children
including parentsʼ frequently asked
questions
• Epilepsy and Intellectual Disability
Epilepsy issues relating to intellectual
disability including information on
behaviour observation to help identify
between seizure-related behaviours and
other types of behaviour such as autisticrelated behaviours
National Epilepsy Week (May 17th – 23rd)
2010 will see the launch of Brainwaveʼs
fourth Information Pack specially designed
for a specific audience. Following the
success of similar initiatives for GPs,
Employers and Teachers, Brainwave has
produced an information resource pack
especially for Nurses.
With almost 70,000 registered nurses in
Ireland, it is not feasible or indeed
necessary to send every nurse a copy of
the pack, but Brainwave will be targeting
those with the greatest exposure to epilepsy
such as Practice Nurses; Public Health
Nurses, Intellectual Disability Nurses, A&E
Nurses, Paediatric nurses and of course
Neurology Nurses. About 20,000 packs will
be distributed over the coming weeks and
months.
• Epilepsy and Women
Fact sheet covering principal issues
relating to women and the management
of their epilepsy
• Treatment of Epilepsy
How epilepsy is treated, including
investigative procedures; surgery and
complementary treatments
• Helping Your Patient
Epilepsy and lifestyle issues; how to
assist patients get the most from
appointments including life span
discussion issues from pre-schoolers to
older people with epilepsy
Contributors
The pack has been developed over the past
18 months by a team of hard working
writers, all of whom we at Brainwave would
like to thank:
• Denise Cunningham, Clinical Nurse
Specialist
in
Epilepsy
Services,
Brainwave and AMNCH, Tallaght
• Sinead Murphy, Community Epilepsy
Specialist Nurse, Brainwave and
Beaumont Hospital
• Geraldine Dunne, National Information
Officer, Brainwave The Irish Epilepsy
Association
• Maria Keegan, Epilepsy Clinical Nurse
Specialist, Our Ladyʼs Childrenʼs
Hospital, Crumlin
• Grainne Griffin, Epilepsy Clinical Nurse
Specialist, Our Ladyʼs Childrenʼs
Hospital, Crumlin
• Therese Danaher, Lecturer in Intellectual
Disability Nursing, School of Nursing,
Dublin City University
• Cora Flynn, Advanced Nurse Practitioner
in Epilepsy, Beaumont Hospital
We would also like to acknowledge the
contribution of the following people:
• Elizabeth (Noddy) Dempsey, Clinical
Nurse Specialist Neurology, Mater
Misericordiae University Hospital
• Ann Connolly, Paediatric Neurology
Nurse Specialist, Nurse Specialist,
AMNCH, Tallaght
• Suzanne Crowley, Paediatric Neurology
Nurse Specialist, Temple Street Hospital
• Moinne Howlett, Paediatric Clinical
Pharmacist, Our Ladyʼs Childrenʼs
Hospital, Crumlin
Following the familiar format, the Nurses
pack contains six information leaflets and
four posters.
• The Epilepsy Programme
Beaumont Hospital, Dublin
• Paul Sharkey, Brainwave
staff
at
• Claire Dowdall
Funding
Posters
• Seizure Management Chart
Including Seizure Identification and Doʼs
& Donʼts when dealing with seizures
• Adult Medication Chart
• Children’s Medication chart
• International League Against Epilepsy
Classification of Epilepsy Syndromes
Brainwave would also like to thank the
following funders whose support enabled
the production of this important information
resource:
• UCB (Pharma) Ireland Ltd. who have
provided an unrestricted educational
grant towards this project
• The People in Need Trust
• Everyone who represented Brainwave in
the 2008 Dublin Womenʼs Mini-Marathon
9
European Epilepsy
Day to take place
from 2011
Epilepsy is to get its own awareness
day across Europe from next year.
European Epilepsy Day will take
place annually on the second Monday
of February. It will be launched on
14th February 2011, the Feast Day of
St Valentine, who is reputed to have
had epilepsy.
This important event is being created
with the support of the International
League Against Epilepsy (ILAE) and
will be organised through EUCARE (a
joint initiative of IBE and ILAE) and
the International Bureau For Epilepsy
(IBE) European Regional Committee.
The aim of European Epilepsy Day
will be to promote epilepsy
awareness at regional level through
educational
and
promotional
activities. It will send out the right
signals to the European Union, where
more and more emphasis is being
placed on the need for medical and
lay associations to work together on
initiatives requesting the support of
the European Parliament.
A survey of lay and scientific
European epilepsy organisations
found huge support for the move and
planning is now underway to make a
large impact politically and in the
media across the continent.
Further information will be available
on epilepsy.ie over the coming
months.
“Living With Loss”
SUDEP Seminar
Will take place this summer at the
Heritage Hotel, Portlaoise. Date and
speakers to be confirmed soon
For further information please contact
Aisling on 01-455 7500
www.epilepsy.ie
Two epilepsy
projects were
recognised in
the inaugural
Neurological
Alliance of
Ireland
Innovation
Awards, held
as part of
Brain
Awareness
Week.
Innovation in Irish
epilepsy care recognised
Dr Colin Doherty,
The Award is a
St Jamesʼs Hospital
new initiative
aimed at
highlighting the pioneering work being done
by hospitals, charities and other healthcare
professionals in providing services to people
with neurological conditions. Almost 30
entries were received and two epilepsy
projects made it to the final shortlist of just
four.
The Beaumont Hospital Epilepsy
Programme was recognised for its
innovative electronic patient record, outlined
in the last issue of Epilepsy News.
The Epilepsy Service in St Jamesʼs
Hospital was shortlisted for its programme
aimed at reducing admissions and length
of hospital
stay and
improving
access to
services for
people with
epilepsy. Their
care pathway
from
prevention
and managed
primary care
all the way to
specialist
Mary Fitzsimons, Beaumont
inatervention
Hospital Epilepsy Programme
can act as a
template for the transformation of epilepsy
services nationally.
The overall winner of the NAI Innovation
Award was www.try-it.ie, a novel website
that allows people with neurological
conditions to try out equipment and
devices to promote independence and aid
day to day living.
Anne Winslow, Chairperson of the NAI
said “The response to the award in its first
year exceeded all our expectations. The
range and high standard of entries shows
that neurology is a leader in innovation in
our health service”.
HSE says new Clinical Pathways may be
developed for people with epilepsy
Doherty and colleagues in improving the
epilepsy service at the hospital (see above).
The HSEʼs Dr
David Vaughan,
speaking at the
NAIʼs Brain
Awareness
Week
conference in
March
Speaking at the annual Brain Awareness
Week conference organised by the
Neurological Alliance of Ireland, the HSEʼs
Dr David Vaughan stated that the HSE is
looking at appointing Clinical Directors in a
number of neurological areas, including
epilepsy.
Dr Vaughan is a consultant paediatrician
recently appointed to the newly established
Directorate of Quality and Clinical Care
within the HSE, which is under the
leadership of Dr. Barry White. Dr White is
formerly of St. Jamesʼs Hospital and is
familiar with the innovative work of Dr. Colin
Dr Vaughan specifically mentioned
outpatient neurology, stroke and epilepsy
as three areas of chronic illnesses in which
patients may benefit from the creation of the
role of Clinical Director.
The aim of these directors would be to
develop means to improve patient journeys
through the system. They would look at how
services are currently managed, including
long waiting lists, access to specialist
treatment and guidelines for staff in a range
of healthcare settings. They would also be
responsible for developing transparent and
measureable standards for care and
treatment.
Dr Vaughan noted that this process is just
beginning but that it has the potential to
deliver real improvements for patients and
their families. Brainwave welcomes the
HSEʼs commitment to appointing a Clinical
Director with responsibility for epilepsy
services and we hope to report on further
progress in the coming months.
Going To College in 2010
Part 2
By Geraldine Dunne, National
Information Officer
In the last issue, we looked at applying for
college through the CAO and the DARE
programme as well as accessing grants
and registering with the college disability
officer. In this issue we offer some
practical advice for preparing, starting and
attending college.
If you are hoping to go to college for the first
time this autumn you may have been
focusing primarily on study, points and the
DARE application process up to now. Once
the June exams are completed, you may
begin to think more about what going to
college will be like. It is an exciting prospect
and planning ahead will help reduce
potential problems when you arrive on
campus.
It is good to discuss your plans with your
epilepsy team so that any changes to
treatment can be made in advance. It is
useful to seek feedback as to the suitability
of the course and career choice and
whether the team would anticipate any
difficulties arising. Program a reminder into
your mobile phone so you donʼt miss your
next consultant appointment while at
college.
The college may provide on-campus
accommodation and this reduces the travel
time to college. Where possible, it is
preferable to consider ground-level
accommodation in the case of frequent
seizures. If noise is a problem that affects
your sleep, you should take this up with the
management company. Brainwave has a
leaflet on Safety in the home and it would
be advisable to familiarise yourself with it
when moving into new accommodation. If
you use a ventilated pillow, take it with you
or get a second one for college. If you are
sharing accommodation, you will need to
consider how to disclose your epilepsy to
those sharing with you. They need to
understand what to do in the event of a
seizure. If you are in a room alone it would
be important to consider getting a seizure
monitor particularly if you have sleep
seizures. If moving abroad to study you
should consider all these aspects well in
advance and check with the college about
available services and supports.
If you plan to commute, you will need to
consider the length of journey involved,
your timetable commitments and your
tiredness levels. While you are adjusting to
the new routine and its demands, you may
need to prioritise what is most important.
We at Brainwave have met many students
who try to pack in study with leisure and
social life at college while commuting and
trying to maintain an active social or
sporting life at home. You may need to
reduce some commitments to prevent
overtiredness.
Before college starts, register with the
Access or Disability Officer. They are there
to support you and deal with disabilityrelated issues. If you have concerns about
concentration,
memory,
speed
of
processing, seizure management etc. you
can discuss these aspects and supports
can be put in place for you. This applies
even if you are well controlled. Seizures can
re-emerge especially when stress is a factor
and this can affect study and exam
schedules. Likewise, register promptly with
the college medical service and provide as
much information as you can about your
epilepsy, your treatment, neurologists
letters, copies of prescriptions, need for
buccal midazolam etc.
The better informed you are about your
epilepsy the more resourced you are to
cope and communicate with other people
about it. Brainwave literature can be given
to key people who have a need to know so
that the proper procedures are followed in
the event of seizures. The Access/ Disability
service can give support with this and
Brainwave can give epilepsy awareness
training on request.
For those living away from home, new
challenges
arise
such
as
living
independently, being responsible for taking
medication, having regular sleep and meals
and reducing lifestyle triggers. Use
medication reminders, blister packs
(available from pharmacists), or programme
schedules into your mobile phone if
remembering medication is a problem.
Consider the balance between study and
social life. Campus life can be fun but you
need to know your own limits. Late nights,
skipped meals, excess alcohol and street
drugs are all linked to increased seizures.
Your neurologist may have advised on what
is a safe level of alcohol for you (usually 12 units at one time). Bingeing is particularly
problematic so donʼt save all your units for
the weekend. Spirits are best avoided. Try
safer drinks like shandies or non-alcoholic
beers. If peer pressure is a concern, you
can explain that you need to limit your
intake. Genuine friends should never ask
you to put yourself at risk. Know what is not
healthy or helpful for you.
With regard to stress, it is not possible to
avoid it - only to change how we react to it.
Stress is commonplace and students are
especially prone in the run up to major
exams. Stress prevention can be built into
your daily routine. Relaxation classes can
help. Remember you donʼt have wait to
become “stressed out” to benefit from
stress management – the techniques can
help alleviate the build up of stress and give
you more control over how you deal with life
events.
If you take a balanced approach there
should be no reason not to make the most
of the opportunity and enjoy the college
experience. Brainwave wishes you all
every success in the June Exams and with
your chosen college options.
11
Fundraising - Upcoming Events
Monster
Mid-Summer
Barbeque for
Brainwave
Brainwave Table Quiz
(Dublin)
Thursday May 27th
O’Neills, Suffolk St (upstairs), 8pm
€40 per team of four
Get a table together to compete for some
wonderful prizes. Quizmaster: Rick O'Shea,
Brainwave patron and 2FM DJ.
Huge raffle on the night. Book your table in
advance by calling Ashley at 01 455 7500 or
emailing [email protected].
Recipes needed for
Brainwave cookbook
Calling all culinary experts... Ever wanted to
share one of your creations with the rest of
the world? Brainwave's Community
Resource Officer in the Mid West, Anna
Kelly is putting together a book of recipes
which will be sold to support the work of
Brainwave. Anna would like to hear from
anyone interested in contributing with a killer
recipe or two. In particular, main courses
and barbeque recipes are welcome. For
further information, contact Anna at
[email protected] or 061 – 313773
by May 31st.
Win a Cut & Colour at
Staunton Byrne Salon,
Douglas
Saturday June 19th
Maunsell's Bar,
Tullamore, 8:30pm til late
Featuring:
· Live music with the legendary Buck
Taylor & Rock Junction in the outdoor
marquee.
· Tasty BBQ food
· Monster raffle
· Great prizes to be won
All for only €20. Tickets available from
Maunsell's Bar, Ritzy's Hairdressers or
Fox's Shop, Tullamore.
Art Auction, Co. Clare
The Butter Market Gallery Kilrush will be
holding a Charity Art Auction on Saturday June
19th at the Stella Maris Hotel in Kilkee Co.
Clare. Brainwave has been selected as one of
the six charities to benefit from the auction. All
Brainwave members are welcome to attend.
For further information, please contact Peter at
01 4557500 or get in touch with Katrina at the
Butter Market Gallery - [email protected]
Flora Dublin Women's
Mini Marathon
Staunton Byrne Salon in East Douglas
Village, Cork have kindly offered to raffle a
cut and colour to the value of €150 in
support of Brainwave. The raffle runs
throughout the month of May to coincide with
National Epilepsy Week and entry is just €2
per ticket. Our thanks to Declan and all the
staff at Staunton Byrne for their support.
Thurles Race Night
(Rescheduled)
Thursday, May 13th
HQ (off Liberty Square). 9pm - late
FREE admission
If you're in the Thurles area, please come
along and support our Race Night,
organised in conjunction with the Thurles
Lions Club. A great night is in store! Our
thanks to Adrian Purcell and everyone at the
Lions Club for all their work in organising
this event. For more information, call
Brainwave at 01 455 7500.
www.epilepsy.ie
Mycharity.ie and
Facebook fundraising
Thanks to all the ladies who have registered to
take part in this yearʼs mini-marathon in support
of Brainwave. The race takes place on Bank
Holiday Monday, June 7th and Brainwave will
be providing light refreshments to all our
supporters after the race in Cafe En Seine,
Dawson St (very close to the finish line!). Hope
to see you there.
Note: If you have registered for the race but
cannot take part, please get in touch as
someone else might be able to use your slot. If
you missed the registration deadline but would
like to represent Brainwave, please still get in
touch – we may be able to reallocate a
registration to you.
Its always a good idea to set up an online
sponsorship card on www.mycharity.ie for any
events you are taking part in or organising for
Brainwave. An online card means that you can
simply email all your contacts to ask for support
by credit card/ laser rather than having to meet
them to get their donation.
Now online fundraising has become even
easier thanks to a new link between
mycharity.ie and facebook. When you take an
action such as “sponsor a friend”, “donate to a
charity”, or “create a fundraising page” on the
mycharity.ie site, you now have the option to
post a message to your profile on FB telling all
your friends what you have just done, and
encouraging them to do the same. This is a
fantastic way for you to raise even more money
and at no extra time or cost.
Check out www.mycharity.ie
Barrack Hill Ball Run,
Cobh
The annual Barrack Hill Ball run in Cobh
takes place on Bank Holiday Monday 2nd
August.
Thousands
of
sponsored
and
numbered balls will be released from the
top of the hill at 4pm and the person who
has bought the first ball to reach the
bottom will be declared the winner. Buying
a ball costs just €2 and you could win up
to €500.
Brainwave is one of two charities selected
to benefit from the 2010 event and we
need volunteers to take a sponsorship
card to sell individual balls to friends,
neighbours, colleagues etc... Please get in
touch with the Cork office at 021 4274774
to help with this unique and exciting event.
Fundraising - Thank You
National Learning
Network Cork
Tullamore artist donates
painting and raises €650
Brainwave would like to thank artist Maura Fahey from Tullamore who
donated one of her paintings to Brainwave at her Time Out Exhibition in
April. The painting, entitled Autumn Burn (pictured) was raffled on the
night and raised a fantastic €650. Thanks to Maura for her generous
donation and congratulations to the lucky winner of the painting, Dolores
Foley.
For
more
information
on
Maura's
work,
see
www.papillonartstudio.com
Galway Gospel Choir
Easter Concert
“Bernadette” play
proceeds donated to
Brainwave
Brainwave would like to thank all the members
of the Galway Gospel Choir who raised over
€540 for Brainwave from their performance in
the Franciscan Abbey, Galway on Wednesday
7th April. The choir, which is composed of 50
members and directed by Michel Durham,
performed songs of American gospel origin as
well as contemporary music.
Thanks to everyone involved with the Aisteoiri na
Boinne drama group for donating the door takings
from the play “Bernadette” shown in the Droichead
Arts Centre, Drogheda on 26th February. The full
house on the night all enjoyed the play immensely
and almost €1,300 was raised. Pictured above are
Angela Dunleavy (cast member), Michael
Ferguson (writer), Noreen O'Donnell (Brainwave)
and Colin Coleman (cast member).
Thanks to the National Learning Network, Cork
who recently presented Brainwaveʼs Niamh
Jones with a cheque for €546.08, raised from
carol singing last Christmas.
“Wren Boys”
support Brainwave
Back row (l-r) Siobhan Igoe, Evelyn Monson
Kirby, Kevin Igoe, Sinead Cahill. Front row,
Mairead, Denise and Roisin Igoe.
St Valentine’s Roses 2010
Starting in 2004 these young musicians from
Castlerea, Co Roscommon have gone on the
wren on St. Stephen's day and donated the
monies raised to charity. This year it was decided
to give the money to Brainwave. A fantastic €800
was raised. Thanks to everyone involved.
Alison’s daring dive
for Brainwave
Thanks to Alison Kenny from Roscrea, who did
a skydive with Skydive Ireland on March 7th for
Brainwave. Alison's daring dive raised a
fantastic €1,120. Check out the amazing photo
of Alison in freefall!
Dundalk Football match
raises €1,300 in
memory of Paul
A big thank you to everyone all over the country
who helped with the annual Valentineʼs Roses
campaign. Thanks in particular to Sarah Ward,
Bernadette Butler, Martina Warren, Jake Barry,
Anna Wallace, Dave Breathnach, Martin Geary,
Roisin
Hillen,
Maggie
McElligott,
Teresa O'Brien, Annette Russell, Tommy O'Dea,
Mary Keane, Catherine Mullery, Judy
Kavanagh, Ann Traynor, Simone Cellier, Francis
Keenan, Audrey Murphy, Agnes Mooney, TFS
students in Sligo, Athenry Vocational School
and Scoil Chaitriona, Glasnevin. We would also
like to thank the staff
of ACC, CIF, Standard
Life and Aviva for their
support of the Week
and of course all the
shopping centres that
allowed us to collect
on site.
Brainwave would like to thank Noreen and
Fergal from the Rock Inn, Channrock,
Dundalk who recently organised and
supported a fun charity football match in
memory of the late Paul Martin who passed
away last September. €1,320 was raised in
Paul's memory. His mum Carol has donated
the money towards Brainwave's SUDEP
conference which will be held later this year.
In the photograph above, Paul's family and
friends present the proceeds to Noreen
O'Donnell of Brainwave at the Rock Inn.
13
Regional Events
Mid West Region
(Co’s Limerick, Clare and North Tipperary)
For further information on events in this area, contact:
Anna Kelly, CRO
Social Services Centre, Henry St., Limerick
061 - 313773 [email protected]
Monday & Wednesday 9.30am – 4.00pm
Thursday 12.00pm – 4.00pm & Friday 11.30am –
2.30pm
Castlebar: Outreach Service
Thursday 20th May
Le Cheile Family Resource Centre, Tucker St
2.00pm - 6.00pm. To make an appointment, contact Evelyn
Followed by Support Group/ Epilepsy & Stress Awareness
– from 7.30pm
News from the Region
Limerick: Support Group
Thursday 20th May
Social Services Centre, Henry St., Limerick 8.00pm -9.30pm
All are welcome and admission is free
Thurles: Outreach Service
Monday 26th July
Citizens Information Centre, 34/35 Croke Street, Thurles
10.30am - 4.00 pm
Meeting strictly by appointment with Anna Kelly CRO
Thurles: Support Group Meeting
Monday 26th July
Meeting room over the Arch Bar, Liberty Square, Thurles
7.30pm - 9.30pm.
All are welcome and admission free
Epilepsy Awareness and the Administration of Buccal
Midazolam Training
Thursday 2nd September
A limited number of free places are available for Public
Health Nurses who have responsibility for meeting the
health needs of schools but who do not currently have the
expertise to perform administration of Buccal Midazolam
Training to teachers.
Venue: South Court Hotel, Limerick
For further details contact Anna Kelly
Western Region
(Co’s Galway, Mayo, Roscommon)
For further information on events in this area, contact:
Evelyn Monson Kirby, CRO
Ozanam House, St Augustine Street, Galway. 091 568180
Tuesday, Wednesday & Thursday 9am to 5pm;
Fridays 9am to 1pm
Upcoming Events
Outreach Services: University College Hospital
Galway Outpatients
Brainwave's CRO will be available at Dr Hennessy's clinics
on the 2nd and 4th Friday of each month from 9.30am to
1.30pm and at Dr Counihan's clinic on the 2nd Monday of
each month from June 2010 onwards from 1.30pm to
5.30pm. Please enquire at the Nurses Station/Reception
in the Neurology Department.
Cork: Information Day
Wednesday 19th May 2010
Cork University Hospital. 10.00am- 4.00pm
Cork: Parents Support Group
Wednesday 19th May 2010
Bishopstown GAA Club. 7.30pm
Cork City Marathon
Monday 7th June
See www.corkcitymarathon.ie or contact Brainwave for details
Upcoming Events
Roscrea: Outreach Service
Monday, May 17th
Citizen's Information Centre, Rosemary Street, Roscrea,
1.00pm - 5.00pm. Meeting strictly by appointment with
Anna Kelly, CRO
Upcoming Events
Kerry
Stress Management Workshops for people with epilepsy &
family members were held in the OT Department, NUIG, in
February. The programme was devised by 3rd year OT
students, Katherine Moloney & Irene Kerin in collaboration
with Margaret McGrath, OT Dept NUIG & Evelyn Monson
Kirby, CRO Brainwave. These workshops were very
successful and well received by the members who
attended. Thanks to Katherine, Irene & all who attended.
North West
(Co’s Donegal, Sligo and Leitrim)
For further information on events in this area, contact:
Agnes Mooney, CRO
Donegal Office: Grand Central Complex, 2nd Floor, Canal
Road, Letterkenny, Co. Donegal
074 9168725 [email protected]
Sligo Office: Sligo Office: St Vincentʼs Business Park,
Finisklin Road, Sligo. 071 91 54625
Upcoming Events
Letterkenny: Neurology Outpatients Clinic
Every Wednesday morning
Now Doc, Oldtown, Letterkenny
Brainwave CRO will be available to meet with you at Dr.
Murphyʼs Clinic.
Letterkenny: Epilepsy Awareness Presentation
Thursday 20th May
Cheshire Aparts. Long Lane, Letterkenny
9.30am to 12.30pm
Guest Speaker: Denise Cunningham, Clinical Nurse
Specialist in Epilepsy Services.
Sligo: Outreach Service
Outreach is a one to one confidential appointment
available to all Brainwave members by appointment at St
Vincentʼs Business Park, Finisklin Road, Sligo.
For further information on events in this area, contact:
Kathryn Foley, CRO
9/10 The Paddocks, Ballydowney, Killarney, Co. Kerry
064 6630301; [email protected]
Mon, Tue, Wed: 9.00am – 3.30pm; Thurs: 9.00am –4.30pm
Upcoming Events
Kerry: Hospital Outreach
Dr. Helena Moore holds Neurology Clinics on the 1st, 2nd
and 4th Monday of each month (excluding bank holidays)
at Kerry General Hospital. Brainwave CRO Kathryn Foley
is available in the Out Patients Department, room 4 from
9am – 1pm to provide support and information on epilepsy
related issues and a one-to-one confidential service to
people living with epilepsy.
Tralee: Outreach Service
An outreach service is available in Tralee. Please contact
Kathryn to arrange an appointment.
Beaufort: Epilepsy Awareness
During National Epilepsy Week, presentations on epilepsy
awareness will take place at St. Francesʼ Special school in
Beaufort for teachers and staff at the school.
News from the Region
Kerry office official launch
Brainwave The Irish Epilepsy Association, The Kerry Life
and Education service and Home from Home services are
planning an official launch of their services in the Kerry
area. The date for the event is to be confirmed but it is
hoped that it will take place during National Epilepsy Week
May 17th- 23rd. Further details will be available on the
Kerry page in our regional news section at www.epilepsy.ie
Children’s Books
“My Lights Go Out” and “Everything a child needs to know
about Epilepsy” are now available in all 11 Libraries in
Kerry. They are also available to purchase in “The Killarney
Bookshop” and “Pages” book store in Killarney.
News from the North West
Galway: Awareness Talk – Mervue Cadets
Friday 14th May
Community Centre, Below Holy Family Church, Mervue,
Galway. 6.30pm
Roscommon: Epilepsy Awareness/Information Stand
Tuesday 18th May
Flemings Supermarket, Roscommon Town. 1.00pm–6.00pm
Roscommon: Support Group / Epilepsy & Stress
Awareness
Tuesday 18th May
Vita House, Abbey Street, Roscommon. 7.30pm
Galway: Workshop for Professionals (Working Group)
“Improving the Management of Epilepsy in relation to
People with Learning Disabilities” Facilitated by Teresa
Leahy, Neurosciences Nurse Specialist, UHG & Evelyn
Monson Kirby, CRO, Brainwave.
Wednesday 19th May. 10.00am – 12.00pm
National University Hospital Galway
For information please contact Evelyn.
www.epilepsy.ie
Brainwave CRO Agnes Mooney presents Action Zone to
Acquired Brain Injury Service users in Sligo
Cork
For further information on events in this area, contact:
Niamh Jones (CRO for Sth Lee and West Cork)
Mon and Tue 8am – 4.30 pm; Wed and Thurs 8am – 1pm
Mary Lawlor (CRO for Nth Lee and Nth Cork)
Tue - Thur 9am – 5pm; Fri 1pm – 5pm
35 Washington St. Cork.
021 4274774
Siobhan Lynch, MS Ireland, Kathryn Foley, Brainwave
CRO and Lisa Spoogler, ABI Ireland at the Brainwave
Information Stand in the Killarney outlet centre, during
Brain Awareness Week.
Midlands
(Co’s Offaly, Laois, Westmeath & Longford)
For further information on events in this area,
contact: Margaret Bassett, CRO
c/o OCIL, Clonminch Road, Tullamore, Co. Offaly
057 9346790 [email protected]
Tues and Wed 9.30-5pm, Thurs 9.30am–5.30pm, Fri
9.30am-2pm
Regional Events
Upcoming Events
Upcoming Events
News from the region
Dublin: Men’s Support Group
Tuesday, 11th May
Brainwave Head Office, 249 Crumlin Road. 8.00pm
Longford: Epilepsy Awareness Presentation
Tuesday 18th May
CESN Denise Cunningham and Margaret Bassett
Brainwave CRO will provide an epilepsy awareness presentation to the staff of St Christopherʼs Services, Longford.
Balbriggan: Outreach Service
Friday, 10th May and Monday, 12th July
Sarsfield Business Centre Mill Street. 2.00pm – 5.30pm
Tullamore: Epilepsy Awareness Workshop
Awareness meeting for St Maryʼs Youth Club members
Wednesday 19th May
Facilitated by Brainwaves Midlands CRO, Margaret
Bassett.
Athlone: Awareness Presentation at Scoil na Gceithre
Maistri NS
Thursday 20th May
Margaret Bassett, Brainwave CRO will give Epilepsy
Awareness presentations to teachers and to the students
of the three senior classes using age appropriate and child
friendly activities e.g. story time and a fun quiz
Tullamore: Maunsell’s Midsummer Monster BBQ in aid
of Brainwave
Saturday June 19th
Maunsellʼs Bar, Portarlington Road. Starts: 8.30pm
See fundraising pages for more information
Portlaoise: Outreach Service
Wednesday 30th June
CIC, Main St, Portlaoise, by appointment only
Longford: Outreach Service
Thursday 15th July
CIC, Longford Shopping Centre, Longford
by appointment only
Our Lady’s Hospital: Information Stand
Tuesday 18th May
Our Ladyʼs Childrenʼs Hospital, Crumlin
Dublin: Film Night
See Page 3 for details
St. James’s Hospital: Information Stand
Wednesday 19th May
St Jamesʼs Hospital Epilepsy Clinic
Wexford: Information Stand
Monday 17th May
Wexford General Hospital. 11.00am – 1.30pm
Kilkenny: Neurology Clinic
Tuesday 18th May
St. Lukeʼs Hospital, Kilkenny
Brainwave CRO in attendance
Kilkenny: Information Stand
Wednesday 19th May
Main Hall, St. Lukeʼs Hospital, Kilkenny. 10.00am – 1.00pm
Waterford: Support Group
Wednesday 19th May
Cheshire Home, St. Johns Hill, Waterford. 7.30pm - 9.00pm
Waterford: Information Stand
Thursday 20th May
City Square Library
Clonmel: Support Group
Thursday 20th May
Community Resource Centre, Kickham St. 7.30–9.00pm
Kilkenny: Health Professional Training
A one day Training Course for Health Professionals in
Epilepsy Awareness and the Administration of Buccal
Midazolam
Thursday 7th October
Ormonde Hotel, Kilkenny
A limited number of free places are available for Public
Health Nurses who have responsibility for meeting the
health needs of schools but who do not currently have the
expertise to perform administration of Buccal Midazolam
training to teachers. For further details contact Annette
Russell
Arklow: Outreach Service
Tuesday 22nd June
Arklow Health Centre. 11.00am – 4.30pm
(Co’s Dublin, Kildare, Wicklow)
For further information on events in this area, contact:
Ina Murphy, CRO, Brainwave Head Office,
249 Crumlin Rd, Dublin 12. 01 4557500
Kildare Outreach Service
Thursday, 24th June
Health Centre, Kildare Town. 11.00am – 4.30pm
Brainwave Membership Form
(Co’s Kilkenny, Carlow, Wexford, Waterford &
South Tipperary)
Upcoming Events
Dublin: Women’s Support Group
Tuesday, 15th June
Brainwave Head Office, 249 Crumlin Road. 8.00pm
East Region
South East Region
For further information on events in this area, contact:
Annette Russell, CRO
The Ground Floor, St Canices Hospital
056 7784496
[email protected]
Temple St Children’s Hospital: Information Stand
Thursday 20th May
Brainwave CRO Annette Russell with Theresa O’Brien at
the Information Fair for parents and carers of children with
disabilities which was held in the Granville Hotel Waterford
on 24th March.
Membership subscription is €12.70 per annum.
Please tick relevant box:
□ I am a person with epilepsy
□ I have a child with epilepsy
□ Other ______________________________
Name of person with epilepsy: (Mr./Mrs./Miss./Ms) _____________________________________________________
Address: ______________________________________________________________________________________
Date of Birth of person with epilepsy: _______________________________________________________________
Email: _______________________________________________________________________________________
Telephone: ______________________________________ Mobile: ______________________________________
Parents/Guardians of child with epilepsy: please enter your name as correspondence will be sent to you instead of child
______________________________________________________________________________________________
I want to help continue the work of Brainwave and I would also like to make a donation
□€7.30
□€20.00
□€50.00
□€100.00
□My own amount €_______________________________
My Cheque/Postal Order/ Bank Draft for TOTAL PAYMENT € __________ is enclosed. Cheques should be made out
to Brainwave The Irish Epilepsy Association and returned with this form to:
Brainwave, Irish Epilepsy Association, 249 Crumlin Road, Dublin 12.
You can also join or renew your membership:
• At www.epilepsy.ie
• By credit card or laser – call 01 4557500
• Standing Order – call 01 4557500 for a standing order form
Thank you for your support
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