Epilepsy News - IN THIS ISSUE: Sun comes out for Family Fun Day - Epilepsy Ireland
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Epilepsy News
Epilepsy Ireland Issue 82 Autumn 2018
Sun comes out for IN THIS ISSUE:
Family Fun Day • 2018 National Conference
• Research funding scheme reaches €1
million
• Epilepsy’s Ireland new membership plan
• Donna Kennedy – My epilepsy journey
CONTENTS NOTE FROM THE EDITOR Conor Culkin
3. News Update As the hottest summer expert in areas such as improving people’s
for 40 years comes to lives and business development. We have
4. National Conference 2018
an end, we now look another personal story on page 7 with Síle Ní
5. Donna Kennedy - My forward to autumn as Dhubhghaill who discusses overcoming her
Epilepsy Journey children go back to fear of seizures.
school and we make On page 5 we outline a significant
6. €1 Million Milestone for
our plans for the rest achievement as Epilepsy Ireland has now
Research Funding of the year. Indeed committed over €1million in funds to Irish
7. Overcoming ‘The Fear’ of children play an important part in this issue epilepsy research! Gianpiero Cavalleri and
Seizures as Epilepsy Ireland were delighted to hold Naomi Elliot, who received funding, discuss
our annual ‘Family Fun Day’ in Clara Lara Fun why research is so important.
8. Family Fun Day Park. Thankfully, the sun was shining and
9. Electric Feathers some nice images can be found on page Since the foundation of Epilepsy Ireland in
8 as well as on the front cover. As a charity, 1966, we have always been a membership-
10. New Membership Plans we are always proud to team up with other based organisation. As part of our current
11. EI is ‘Triple Locked’ like minded organisations and in July there Strategic Plan, Epilepsy Ireland have recently
was another wonderful collaboration with completed a full review of our membership
New Pack for Teaching offering, aimed at both growing and
Helium Arts which can be read on the
Staff following page. improving the benefits of membership. The
12. Fundraising main details of the new plan can be read on
The National Conference continues to be page 10.
14. Regional Events Epilepsy Ireland’s most important annual
event and brings people together from Also in this issue the our new Teachers Pack,
15. Membership Form all over the country to share experiences Epilepsy Ireland’s Triple Lock approval and
about the condition. This year the event the regular fundraising page.
comes back to Dublin and we have a host Finally, I’d like wish our readers a great
Front cover image: of top quality speakers which are detailed autumn and I hope you enjoy this issue of
The O’Neill family from on page 4. One of the speakers, Donna Epilepsy News.
Kennedy, outlines her incredible story on the
Co. Laois enjoying the
next page which has led her to become an
Family Fun Day.
TFS ENROLING STUDENTS FOR
2018/19 YEAR
249 Crumlin Road,
Dublin 12.
Tel: 01 4557500
Fax: 01 4557013
Email: info@epilepsy.ie
Web: www.epilepsy.ie
Registered Charity Number:
20010553
CHY Number: 6170
Design and layout by
Students from the Training For Success class of 2018. The pre-employment training course is
PlipSpace.com still looking to fill its final few places for the 2018/19 year. For more information log onto
Printed by Doggett Print & Design www.epilepsy.ie.
2
NEWS UPDATE
This programme featured 40 year old “About 80 percent of Dravet syndrome cases
Brian Byrne from Swords who has severe are caused by a mutation in a gene called
intractable epilepsy which has affected him SCN1A. When this gene doesn’t work as it
since his was an infant. The documentary should, sodium channels in the brain, which
followed Brian as he attended Beaumont regulate brain activity, do not function
Hospital, under neurosurgeon Mr Donncha correctly... In our studies, the peptide from
O’Brien, as he underwent surgery to remove spider venom was able to target the specific
Sodium valproate latest news the seizure-causing tissue from deep within channels affected by Dravet, restoring
In the last issue of Epilepsy News, we his brain. the function of the brain neurons and
reported that the HSE, through their The programme also stressed that 700,000 eliminating seizures”.
recently established Valproate Response people in Ireland suffer from some form Although the findings are based on early-
project team, were to write to all female of neurological condition. As this number stage animal models, the team is hoping
patients currently taking valproate (Epilim) is set to increase as the population ages, that in the future, Hm1a can be developed
outlining the risks of the drug in pregnancy the importance of brain research and into a precision medicine for treating Dravet.
and the need to discuss treatment with improving public understanding cannot be
their medical team. underestimated. https://goo.gl/D57Z2i
These letters are scheduled to be sent in https://goo.gl/8MVCkz Dublin Students take Gold at
late August to 3,500 patients. All women
Global Innovation and Enterprise
prescribed under the GMS will be written Parents of children with epilepsy
World Cup
to, as well as parents of girls aged 8 and wanted for UCC study on how
upwards. The letters will contain a copy children adjust to having epilepsy
of the new Patient Information Leaflet on Researchers at University College Cork are
Epilim as well as contact details for the HSE’s inviting parents of children and adolescents
new nurse-led Valproate Patient Support with epilepsy to participate in family-
Team. Similar letters will be sent to GPs, focused research aimed at improving
naming specific patients on valproate and adjustment for your child.
encouraging them to arrange appointments
with patients as soon as possible. The study will look at outcomes (medical,
If you have received this letter and wish to behavioural, school) in children who have
discuss any of the issues included, please epilepsy and at what medical, personal and Three teenagers from St Joseph’s College,
contact the HSE support team at 1800 family factors help or hinder the child in Lucan, Co. Dublin have won Gold at the
810077 (Monday - Friday 10am -4pm) or adjusting well to epilepsy. SAGE World Cup 2018 taking place in
www.hse.ie/epilim. The study is being carried out by UCC in Durban, South Africa. The Global contest
collaboration with the Department of recognises Teen Entrepreneurship and
Meanwhile, Minister Simon Harris has Business Literacy. The students were
written to the FACS Forum to indicate that Paediatric Neurology at Cork University
Hospital and Epilepsy Ireland. By enrolling in announced last Monday evening as world
he does not believe that an investigation champions of the Socially Responsible
into the historical use of valproate in Ireland the study, there is an opportunity for some
parents to take part in a one-day parent Business category for writing and publishing
is currently warranted. The Forum has been children’s books that feature a hero/heroine
campaigning for an inquiry and in June, workshop, which has shown promise in
research with other populations of children with a disability which included epilepsy.
received the support of the Oireachtas Aoife Dardis, Katie Grogan and Caoimhe
Health Committee which recommended with chronic illness and disability.
Currie travelled to South Africa to compete
the establishment of an independent Parents of school children aged between 6
in the prestigious competition. The girls
investigation to examine the historical use and 16 years can take part, with a diagnosis
have already produced three original
of valproate in Ireland and into its ongoing of epilepsy and a seizure frequency of at
illustrated story books which promote their
effects. least 1 per 12 months. For more information
important message of inclusion. One of the
please contact Emma Hennessy (emma.
https://goo.gl/UwUc71 books “Anna’s Amazing Aura’ tells the story
hennessy@hse.ie).
of a mermaid with epilepsy who uses her
Huge reaction to RTE https://goo.gl/EKJuUU knowledge of the condition to rescue a
documentary featuring epilepsy Dolphin.
An RTE documentary (‘My Broken Brain’) Spider venom may help treat Aoife Dardis said: “We are so proud to
which focused on a number of neurological Dravet Syndrome represent Ireland at the SAGE World Cup
conditions, including epilepsy, received A new study carried out in University of and are delighted to be bringing home the
a huge reaction when it aired in July.. Queensland (Australia), has discovered that Gold Award. We believe we are making a
The programme was the most talked a protein found in spider venom called real difference and are looking forward to
about topic on Twitter in Ireland the night Hm1a could potentially help to create an developing our project throughout Ireland
of the broadcast and is being credited effective medication for Dravet syndrome. and beyond.”
with opening the eyes of Irish public to Prof. Glenn King, an author of the study
the realities of living with neurological published in the journal Proceedings of the https://goo.gl/8wD6GY
conditions. National Academy of Sciences, explains:
3
NATIONAL CONFERENCE 2018
The 2018 National Epilepsy Conference functional imaging of language and features in national and international
will be held on September 29th (9.30am- clinical epileptology and neurology. media as an expert in the areas of
4pm) in the Radisson Blu Royal Hotel in Dr Doherty will be discussing the current personal and business development and
Golden Lane, Dublin 8. Here we outline developments in epilepsy and scientific she has given seminars to thousands
some of the contributors who will speak research. He will be paying special of people and companies worldwide.
on the day. attention to the latest findings in brain Her work has also been recognised and
cited in international journals by leading
Dr. Colin Doherty imaging, genetics and epigenetics of
epilepsy. Dr Doherty will also discuss organisations and faculties.
information technology and how the Donna experienced several challenges
latest gadgets and devices can help including an epilepsy diagnosis in
patients monitor their epilepsy. her early years but overcame those
challenges against all odds (see page
Donna Kennedy 5). Donna’s passion is to teach others to
reach their potential.
Donna’s presentation will focus on ‘The
Confidence to Succeed’, showing that
no matter what the circumstance, there
Dr. Colin Doherty is a consultant is a way to achieve your goals with
neurologist and Honorary Senior lecturer confidence and dignity. Donna says:
in neurology at St James’s Hospital in “Epilepsy is still a bit of a taboo in that it
Dublin. He was trained in the Partners can frighten people and is sometimes
neurology residency programme at seen as something to be hidden. It
Harvard Medical School, Boston and shouldn’t be. I would like people to
Donna Kennedy is a three time best-
subsequently completed Fellowships in understand that they are not their
selling author, psychologist, business
Epilepsy and Cognition. He has published epilepsy. They are a person who happens
and life coach and a highly sought
widely in the areas of brain imaging to have seizures. With the right attitude,
after professional speaker. She regularly
in epilepsy, the genetics of epilepsy, anything is possible.”
Emma Eager, Helium Mary Fitzsimons Jarlath Varley, RCSI and Peter Murphy, Epilepsy
Arts – Young People with Beaumont Hospital - EPR Beaumont Hospital – Ireland CEO – Sodium
Epilepsy and Lighthouse Project EPiC Project Valproate
Peter Murphy will discuss
recent developments
concerning the use of
sodium valproate (Epilim). An
epilepsy drug which has led
to serious birth defects and
developmental disorders.
For more information and
to book your place at the
Helium Arts is the national Mary will discuss the Epilepsy Jarlath will be discussing National Conference please
children’s arts and health Lighthouse project, which “Epilepsy Partnership in Care” see the leaflet enclosed with
organisation. The organisation was built upon the success of or EPiC. The project allows this issue. You can also call
brings art, creativity and play the Epilepsy Patient Record people with epilepsy to work 01 455 7500, email info@
to children and teenagers in Beaumont Hospital. The together with health service epilepsy.ie or book online at
in hospitals and healthcare Project is currently working personnel to design care www.epilepsy.ie.
settings across Ireland. Emma with 50 children and 50 adults processes that suit patient
Epilepsy Ireland would like to
will be discussing Helium and with Intellectual Disabilities needs and respect their
thank UCB, GSK, Nutricia and
Epilepsy Ireland joint projects who also have epilepsy to individual preferences.
LivaNova for their support
which have helped young develop a new paradigm of The EPiC project is a
people with the condition healthcare delivery for Ireland. of our conference through
collaboration between the educational grants.
through creativity. Health Research Board (HRB),
the Health Services Executive
and The RCSI.
4
DONNA KENNEDY – MY EPILEPSY JOURNEY
I spent three months in that hospital.
The day I was admitted I was given an It’s easy for a
anti-anxiety pill to “take the edge off”
and a sleeping tablet to “help me get condition or
through the night”. When I woke up situation to seem bigger
upset (understandably) I was given a pill
“to help me feel more comfortable” and
than you but I am living
then another to “get me through the day”, proof that if you approach
before being sent later for a CAT scan. a messy situation with a
Looking back now, I was treated like a
human guinea pig. I was prescribed 14 positive attitude then it
medications during that time. I came into doesn’t have to take
the hospital a normal girl with symptoms
After a misdiagnosis, Donna Kennedy’s that needed to be investigated but within
up so much of you.
life faced a crisis but she overcame her three months of degradation and pills I
challenges to have a flourishing career. had turned into a zombie-like robot. My I still zone out sometimes, I look weird
I was top of my class at university, I was initial symptoms were still there. sometimes, my head hurts, and I feel
modelling, I had good friends and a lovely The second opinion vulnerable and stupid, but the reality is
family - my life was made. On March 18th Eventually I was taken out of the hospital every person on the planet is equally
1998 everything changed. and brought to a private hospital for vulnerable in some way at some time. I
a second opinion. The next doctor guess having epilepsy is just a more visible
“Once you’re in here, you’ll always be back.
requested my file, asked me and my form of vulnerability. It’s not something to
This place has a revolving door”. A woman
family questions to get an overall picture be ashamed of or to be limited by. Once
in a dirty green cardigan towered over me
of my situation, and monitored me for you learn to manage those symptoms
as I sat in the waiting room of a psychiatric
a few days. My Dad was frustrated and with the right approach life is pretty good!
unit. She reeked of cigarettes, her skin
was pale and her eyes were lifeless. The confronted the doctor. “Can you tell me Donna Kennedy will be talking about
certainty in her voice terrified me. why Donna was perfectly fine before the how she overcame her epilepsy and
accident and now she’s like this? Surely giving motivational advice at Epilepsy
“Donna, it’s your turn to see the doctor
the bang on the head had something to Ireland’s National Conference in The
now”- my mother and father beckoned
do with it?” The doctor was horrified. There
me into a psychiatrist’s office. Radisson Blue Hotel, Golden Lane,
was no mention of the accident or the
I sat down and the psychiatrist asked me Dublin on September 29th. Book your
brain scan, which showed a haematoma
to explain what had been going on for on my left temporal lobe, in my file. There place at The 2018 National Conference
the last couple of weeks. I explained that was no account of seizures my parents by logging onto www.epilepsy.ie or
I had been in a car accident and hit my had reported either. calling 01 455 7500 and also email
head and that I began to hear mumbles in info@epilepsy.ie.
With further investigation, the doctor
my head, my head hurt and I felt “dreamy”.
suspected temporal lobe epilepsy. He was
It was the only way I could describe it. I
correct. I have lived with epilepsy now for
had gone to my GP to investigate what
twenty years.
was going on and, due to the emotional
difficulties I had as a child, I was prescribed Admittedly I felt a part of my life had
anti-depressants, even though I insisted I been taken away from me needlessly,
wasn’t depressed. I took them anyway as I but I knew I only had two ways to go, to
was told they’d make me “feel better”. They give up or build up and I have chosen the
didn’t. I was still getting symptoms. After latter. Despite everything I have become
a series of questions, the psychiatrist told successful.
me to wait outside. She called my parents Not giving in
back in and within five minutes they I have come to realise that having a
returned to me, my mother crying, and condition like epilepsy does not mean you
my Dad devastated. My heart sank. Had I have to stop living. It’s easy for a condition
cancer? Was I going to die? or situation to seem bigger than you but
Shock I am living proof that if you approach a
“Donna the doctor said you are a danger messy situation with a positive attitude
to yourself and you have to stay here. She then it doesn’t have to take up so much
said you have schizophrenia.” I sat frozen of you. It’s important to take your power
in shock. I didn’t have schizophrenia! What back so you don’t stay down when you fall
was she talking about? My mother and down. Circumstance should never define Donna frequently features in national and
you or your identity. international media as an expert in the areas
father knew I didn’t either, but they were such as improving your life and business
bound and I had to stay. development.
5
EPILEPSY IRELAND REACHES €1 MILLION MILESTONE
FOR RESEARCH FUNDING The Scheme was set up to provide epilepsy researchers in Ireland
with an avenue to access funding for world-class research and we
A new research grant awarded under the 2017/2018 round of
are proud of the impact that has been made. This would not have
the Epilepsy Ireland Research Funding Scheme has resulted in a
been possible without the generosity of hundreds of donors over
significant milestone – since the establishment of the Scheme
the past decade who have donated or fundraised for our work.
in 2009, we have now committed over €1million in funds to Irish
Thank you to everyone who has supported our work and we hope
epilepsy research! We will have more information on the latest
that you can continue to do so.
project to receive funding in the next issue of Epilepsy News.
Since inception, we have focused not only on the scientific quality
In total, we have funded 11 Irish based projects since 2009 at
of proposals received but also on their relevance to people with
RCSI, Trinity College, University College Dublin and other research
epilepsy and on their potential to deliver tangible benefits to the
institutions. Many of these projects have been co-funded by the
lives of people with epilepsy.
Health Research Board under the Medical Research Charities Group
Joint Funding Scheme. Projects have investigated a wide range of In the first of a two-part series, we speak to researchers who have
issues including epilepsy genetics, molecular mechanisms, health received grants from Epilepsy Ireland to discover more about what
services, psychosocial issues and SUDEP. was achieved by our investment and why it was important.
Dr Gianpiero Cavalleri, Royal Why is it important for Epilepsy Ireland What did your research project achieve?
College of Surgeons in Ireland to continue to fund research? Using the experiences of adults (aged 18+
Research is essential if we wish to see an years) with a range of forms of epilepsy and
improvement in the lives of people with personal backgrounds, How2tell developed
epilepsy. However, traditionally, epilepsy a set of multi-media educational resources
is very underfunded compared to other on self-disclosure. The resources including
neurological conditions. This not only slows the How2tell website, app and booklet,
progress but also limits our ability to get the assist people to develop effective strategies,
best researchers working to solve epilepsy. so it is less challenging to tell others that
Ireland is becoming globally recognised for ‘I have epilepsy’. How2tell gives practical
epilepsy research, and a significant part of information in the following areas: how to
Project: A pharmacogenomic study of
that success is due to support from Epilepsy become comfortable with your epilepsy;
chronic refractory epilepsy (funded
Ireland. That research success allows Irish decide why, who and when to tell; use
2009)
researchers to compete for, and attract different opportunities to tell; tell people
What did your research project achieve? more money to research from overseas depending on who they are and deal with
Our project explored the contribution – e.g. from the European Union, from people’s reactions.
of genetic factors to treatment-resistant international epilepsy charities and national Why is epilepsy research important?
epilepsy. The work supported the funders such as the Health Research Board. Epilepsy research is important in
generation of dense genetic signatures for This is illustrated through the establishment understanding how it affects people’s
treatment resistant epilepsy. These datasets by Science Foundation Ireland of the lives and to developing resources that
were further analysed to identify new risk FutureNeuro Centre of Excellence, which will help people with epilepsy manage
genes for epilepsy, and to identify genetic is studying epilepsy as a key condition of their condition in everyday life situations.
predictors for severe skin reactions relating interest. There are many gaps in what we know
to the use of Tegretol.
Dr Naomi Elliott, Trinity College about epilepsy, so research is important in
Why is epilepsy research important? Dublin growing knowledge that is evidence based
In order to create more effective treatments which is then used to inform educational
for epilepsy, we need to improve our resources that assist in supporting the day-
understanding of the brain generally, and to-day living of people with epilepsy.
how epilepsy develops specifically. This is
Why is it important for Epilepsy Ireland
what research is about – improving our
to continue to fund research?
understanding of complex systems and
Epilepsy Ireland has an invaluable role to
situations, in a manner that leads to better
play in setting the research priorities for
treatment and care, and ultimately, a cure
people with epilepsy in Ireland. Members
for epilepsy. Research can span from how
of Epilepsy Ireland therefore, can influence
healthcare is delivered at a population level,
the decisions regarding what research is
right down to how our cells behave at a
important and can make a difference to
microscopic level.
Project: How2Tell (funded 2014) managing epilepsy in their everyday lives.
6
OVERCOMING ‘THE FEAR’ OF SEIZURES
Seizures are horrible. They are hard to explain and they are
different for everyone. When I feel one coming I get this huge
rush of something that is a mix of euphoria and terror. I want to
scream but my jaw locks. I really need to call for help but I can’t.
Then I black out and when I come around I have no idea what’s
going on for a while. Apparently, I say some really weird words in
that half hour before my brain kicks back in properly. I always ask
people to tell me what I said because, to be honest, it’s pretty
hilarious. That’s not the worst of it though. How can I describe
the day or two after? Imagine not having been to the gym in
ages, and you do a crazy hard workout. After that you decide
to get really drunk. You wake up the next day with a pounding
hangover, that stiff, sore, day after a mad workout feeling, and
you get a blinding migraine to top it all off. That’s how I feel for
the couple of days after a seizure. It’s not pleasant.
Fear of seizures
For me, seizures aren’t the worst part of epilepsy. They didn’t
happen too often and I haven’t had one in 6 years. The worst
part is living with the fear. At the time of my diagnosis, I was
studying music and a big part of that is performing in front of
Music teacher and political activist Síle Ní Dhubhghaill people. Getting up on stage is scary. It’s even scarier when you’re
(35) discusses how she has come to terms with her fear of worried you might have a seizure and wet yourself in front of
seizures. an audience. You know what else is scary when you are living in
I was diagnosed with epilepsy at the age of 19. To say it was a fear of having a seizure? Walking around town, being in a busy
shock is an understatement. I never had any symptoms or signs. pub, a shopping centre, crossing a busy road, being on public
One day, I was in my apartment, minding my own business, and transport, in the cinema, in a restaurant, anywhere that people
I had a tonic-clonic seizure. My housemate called an ambulance can see you. Conversely, it’s also really scary being on your own,
and I spent a few days in hospital. I don’t remember any of whether that’s out and about, or in your own home. You wonder
this – probably due to the fact that I hit my head quite hard on what would happen if you were alone and you hit your head, or
the coffee table as I fell. Apparently, I had many different brain drowned, or started a fire. You start to fear everything you ever
scans. A relative of mine had a brain hemorrhage because of thought was normal.
a malformation of the blood vessels in his brain and it can be
Overcoming the fear
hereditary, so they did lots of tests to rule that out. No brain
I suffered from anxiety when I was young, which probably didn’t
hemorrhage thankfully, just a common tonic-clonic seizure with
help matters much. I went from spending days or weeks hiding
no apparent cause. At the time, they didn’t say it was epilepsy. I
out at home, to days or weeks of being reckless. Gradually, I
learned that it is quite common for people to have them once
settled down. I accepted my diagnosis, accepted that fear was
in their lives and never again. It’s all a bit of a blur, but I left the
part of it, and that the fear helped me to be careful and look
hospital that time assuming it was just a weird blip and wouldn’t
after myself. I wouldn’t say that we are friends, the fear and I,
happen again.
but we have come to an understanding. We have a truce. I’m
It did happen again. Pretty soon in fact. When I had the 35 now and seizure free for 6 years. I have my own business, a
second seizure, they diagnosed it as epilepsy. I was prescribed music school. I teach and my work is very rewarding. I drive, I
medication and went through the awful trial and error of trying socialize, I enjoy my life. I have achieved everything that I would
to get the dose right. In the beginning, the amount I was have achieved had I not had epilepsy. Maybe I even achieved
on made me feel like a zombie. I couldn’t function, couldn’t more, because I think it gave me a determination to succeed
study, couldn’t practice properly (I was studying music). Things that I didn’t have before my diagnosis. I’m still afraid sometimes
improved, partly because they lowered the dose, and partly but I choose to see the fear as a healthy reminder of what I have
because I got used to it. overcome.
Acceptance It can be difficult to understand these feelings if you don’t have
I got used to a lot of things: the medication every day, looking epilepsy, but I imagine those of you who do can relate to some
after myself a bit better, not being able to drive, trying to get of what I describe here. Remember though, if you are currently
enough sleep, leaving gigs and nightclubs if there were flashing experiencing any of this, that things can really change for the
lights. There are two things I found it more difficult to get used better if you face your fears, and ultimately overcome them.
to: having seizures and living with the fear of having seizures.
7
FAMILY FUN DAY AT CLARA LARA FUN PARK
Community Resource Officer, Carina Fitzgerald looks back on With the amazing weather in July, it was great to have lunch
another successful family fun day. outside at one of the many picnic tables reserved for our
On Saturday July 14th we had our annual Family Fun day at families. A special moment was when we brought out the cake
Clara Lara Fun Park in Co. Wicklow. Clara Lara comprises of 30 to mark Lorcan Keely’s birthday. One family gave me the good
acres of countryside in the Avonmore River valley and is very news that their son was being weaned off his medication.
scenic in a beautiful setting. Mum and Dad were delighted; however, Mum told me her son
was upset that he may no longer have epilepsy as he would
There was huge demand for places and we were thrilled not be able to come to our Family Fun Day! Active epilepsy or
that over 120 people attended including almost 70 children. not, our families are always welcome at our events.
Like last year, we gave everyone an Epilepsy Ireland sticker
so families could identify each other, though the children The Family Fun day has become one of everyone’s favourite
probably lost theirs quickly in one of the many water activities! events in the calendar, and we are looking forward to next
One parent commented to me that it was a good chance to year’s event already!
chat with other families living with epilepsy, it being optional
not compulsory!
Evie Boylan pictured with Epilepsy Irela Family Fun Day.
Community Resource Officer, Carina
nd The Spillane family pictured at the
Fitzgerald.
an pictured with Karen Keely and Evie Boylan.
Community Resource Officer, Edel Curr
Karen Keely and her sons Lorc an and Harry.
8
ELECTRIC FEATHERS SHOW THEIR SPARK
The Electric Feathers teen art group took part in another three the final day which included a mini exhibition for families and
day art camp at IMMA last July in partnership with Helium Arts. guests. Funded by the ‘Artist and Youth Work Residency Scheme’
Epilepsy Ireland were again proud to collaborate in another which is managed by the National Youth Council of Ireland on
project which inspired young people with epilepsy. The three behalf of the Arts Council Ireland and the Department of Children
days were led by artist Rachel Tynan and these photos capture and Youth Affairs.
Photos by Thom McDermott.
ted by participants.
Electric Feathers t-shirts screen prin Gemma, Melissa, Francesca and Nico
le putting their best
foot forward.
Gemma pictured with her
proud dad Geoff Conroy. Artist Rachel Tynan and Robert work on
group artwork.
Robert
creating his
sculpture.
r brother .
ion with Sophia and he
Gemma getting involved with hand
painting. End of camp exhibit
9
EPILEPSY IRELAND’S NEW MEMBERSHIP PLANS
and the membership fees. As part of the The best value can be had by joining
review, feedback was invited from current for five years. In addition to all of the
members via an online survey which was above, you will receive the new MediMee
completed by over 100 people. emergency bracelet (RRP €20) and a free
A range of new packages outlined below safety pillow (RRP €40).
are being introduced from October 1st As has always been the case, each member
2018. Instead of the old one-year or two- we have makes our voice stronger when
year options, there are now options for representing the needs of people with
one, three and five year memberships. epilepsy to the government and health
In addition, members can now select services. Weight in numbers means more
Since the foundation of Epilepsy Ireland in whether they wish to receive Epilepsy can be achieved.
1966, we have always been a membership- News by post or by email, meaning that
based organisation. This means that we are These represent the most significant
there are now six payment options to changes to membership in over 20 years.
run by our members in accordance with choose from to suit your needs.
our constitution for the benefit of people In that time, membership fees have not
with epilepsy and their families. Under the new structure, all members been increased (the rate of €12.70 p.a.
will receive four issues of Epilepsy News is a direct conversion of the old £10)
While technological advances in by email each year, have access to all while costs have significantly increased,
recent years have made it easier for us support services, receive a silicone epilepsy in particular the cost of postage. For that
all to communicate and form virtual wristband, avail of a cost-price safety reason, it has become necessary to revise
communities, it remains vitally important pillow and can attend/ vote at the AGM the fees, but we have carefully considered
that there is a strong, vibrant membership and in setting the organisation’s strategy. members’ feedback in this regard and
base in order to best support and worked to ensure the best possible value is
represent the epilepsy community. Members who join for three years will in
addition receive our new Membership delivered across all of the options.
As part of our current Strategic Plan, we Card which can be used to obtain We hope that you agree and we look
have recently completed a full review of discounts with Bus Eireann and Select forward to your continued membership.
our membership offering, aimed at both Hotels (to begin with); our full range of For more information, see www.epilepsy.
growing membership and improving the information booklets on a pre-loaded ie or contact us at info@epilepsy.ie or your
benefits of membership. Other issues memory stick and discounts on our local office.
that were addressed included the need National Conference (the only EI event for
to present better choice to members Please see the new membership form on
which a fee applies). page 15.
1 year 3 year 5 year
Epilepsy News PDF by email 4 4 4
Support Services 4 4 4
Free Silicone Wristband 4 4 4
AGM Voting Rights 4 4 4
National Conference Discount 5 4 4
Pre-loaded Memory Stick Resource Pack 5 4 4
Free Membership ID Card 5 4 4
Select Hotel and Bus Eireann Discounts
Free Medimee Wristband 5 5 4
Free Safety Pillow 5 5 4
Available at cost price (€22 ) Available at cost price (€22)
WITHOUT PRINTED NEWSLETTER 1 year 3 year 5 year
Membership Fee €15 €40 €65
Epilepsy News by Post 5 5 5
WITH PRINTED NEWSLETTER 1 year 3 year 5 year
Membership Fee €25 €70 €115
Epilepsy News by Post 4 4 4
10EPILEPSY IRELAND IS NOW ‘TRIPLE LOCKED’
gold standard for Irish charities to offer assurances to donors,
members and the general public and comes just three
months after we were awarded the PQASSO Quality Mark for
the second time.
To achieve the Triple Lock, we:
• Adopted and maintain compliance with the Guidelines for
Charitable Organisations on Fundraising from the Public.
• Prepare our annual financial statements in compliance with
the Charity SORP (Statement of Recommended Practice
under FRS102) accounting standard.
• Recently completed the implementation of the
Governance Code for the Community and Voluntary Sector.
The Code comprises a set of recommended practices for
Epilepsy Ireland is delighted to announce that we have been the boards of Irish charities and was adopted in full by the
awarded ‘Triple Lock’ status by the Charities Institute Ireland Epilepsy Ireland board in July 2018.
(CII).
We have also committed to keeping our compliance under
Triple Lock status is awarded to charities that uphold the ongoing review, and we look forward to the publication of a
highest standards in transparent reporting, ethical fundraising new code of governance by the Charity Regulator later this
and strong governance structures. This recognition is the year.
NEW PACK FOR TEACHING STAFF
will reflect the needs of staff in these settings as well as the
traditional schools sector.
Since the first pack was developed we have seen expansion
of the pre-school sector with further developments of specific
supports for children with disabilities accessing preschool.
There have been changes too in supports available to school
students through the new model of special needs supports
which was rolled out last September. This has meant that
for the first time children with epilepsy who may struggle in
school will be eligible to access supports. For school leavers
and those returning to education there are improved options
within PLCs and Access courses, and students with disabilities
have increased participation through schemes such as DARE
for higher education.
The new pack will aim to inform staff across education setting
Epilepsy Ireland is updating and expanding on our Teachers
about the particular needs of students with epilepsy of all age
Pack for the coming Autumn. The existing pack has served
ranges. It will cover topics such as what epilepsy is, how it can
the needs of teachers in primary and secondary schools
be managed in education settings, how to support students
very well since it was first launched and distributed to every
with epilepsy, roles of education partners, families and
teacher in the country.
students in developing Care Plans and policies, educational
Since then many changes have taken place in education impact of epilepsy and supports available to schools and
and there have also been plenty of changes in how epilepsy colleges to assist with training staff in epilepsy awareness and
is managed, treated and even the names of seizures. It is use of emergency medication.
increasingly true to say that for many children education
We hope this new pack will be as successful in breaking down
is starting earlier and for many adults it is continuing
barriers and informing staff in all education sectors as the
longer than was the case previously. Initiatives such as the
original pack has been, while reflecting the changes within
ECCE preschool scheme and the continued growth of the
preschools, schools and colleges around the country.
further education sector coupled with higher participation
rates in higher education mean that there are many more If you’re a parent or teacher who wishes to receive the new
opportunities for staff across education sectors to come into pack please contact your local Epilepsy Ireland office or call
contact with students with epilepsy. Our updated pack 01 455 7500. Thank you also to Bon Secours for sponsoring
this resource.
11FUNDRAISING
Gerry Tobin – RIP Epilepsy Ireland were saddened to learn Gerry, who was from Clonsilla, Dublin is
of the death of Gerry Tobin while taking survived by his wife Mariea, sons Derek
part in the Annual Tour De Gaggs cycle, and Mark. Mariea and Mark were also
an annual fundraiser on behalf of Epilepsy taking part in the cycle.
Ireland in June. At the time of writing a fundraising page
Gerry was an enthusiastic cyclist who was set up by Gerry’s son Mark and raised
participated in the event for the last €3,566.33 on top of the €6,722.53 for the
5 years. The cycle was an unmissable 2018 Tour De Gaggs Cycle. Find out more
weekend in Gerry’s calendar and he made via the link below.
many friends in the Gaggs peloton over goo.gl/rfbMYg
the years.
Liane Deasy Memorial Swim
Epilepsy Ireland in memory of Liane Deasy who passed way from
The inaugural Liane Deasy memorial swim took place in Killiney in SUDEP last year. Since her death, Mark Earley (Liane’s widower)
August. 262 swimmers took part and helped raised €2,100 for has raised over €55,000.
Cobh Ball Run
In memory
• We would like to acknowledge
donations we received in
Memory of John Newcombe
RIP, Mayo
• Thank you to Cian Hyland,
Google and Linkedin for further
donations in memory of Liane
Deasy RIP
• We also received donations in
The annual Barrack Hill Ball run in Cobh took coloured numbered balls bouncing down memory of Catherine Kilbride
place in August. Huge crowds turned out for the steepest hill in Cobh, all in the cause of RIP
the annual spectacular to see thousands of Epilepsy Ireland and other local charities.
Thank you • Congratulations to Rob Lee from • Thank you to Louise Doyle and staff in
• Well Done to Derek Mackessy whose Limerick who took part in the the Commission for Regulation Utilities
mammoth coast to coast walk of just Curraghchase 10k in aid of Epilepsy who raised €231 from their fundraising
under 400 miles to raise funds for Ireland event in support of Epilepsy Ireland
Epilepsy and SUDEP Awareness. Derek • Well done to Triona O’Neill who took • Thanks to Emma O’Leary, Cork, who
undertook this walk during the hottest part in a 3km swim in Loch Lomond raised a brilliant €1040 in the Cork
days in 40 years. Derek has raised a (Great Scottish Swim) in Scotland in Marathon
brilliant €2,429.89 August, and who is soon taking part • Well done to Dunshaughlin GAA Club
in the half marathon in London on who raised €625 for Epilepsy Ireland
September 16th from their cycle
12Black tie
Epilepsy Ireland Ball
Fota Island
Resort Hotel
Saturday 22nd September 2018
Music by Love Bugs - Disco till late
Tickets €80
EPILEPSY IRELAND
Unit 1, 83 Beech Road, Muskerry, Estate Ballincollig, Cork.
Tel: 021 4274774 | info@epilepsy.ie | www.epilepsy.ie
CHY 6170: Charity Number: 20010553
13REGIONAL EVENTS
Clonakilty: Information Morning Arklow: Outreach Service Letterkenny: Administration of
REGIONAL OFFICES for PARENTS on Administration of Arklow Health Centre, Castle Park Buccal Midazolam - Information
Buccal Midazolam Wednesday October 10th Session for Parents, Families &
Cork Quality Hotel, Clonakilty 10.00am – 4.00pm Carers
Tel: 021 – 4274774 Tuesday 16th October Dublin: Support, Information & Epilepsy Ireland Office
Niamh Jones, Loretta Kennedy 10.00am Toolkit Group for People recently Wednesday 3rd October
njones@epilepsy.ie Also suitable for Grandparents/ diagnosed with Epilepsy or Parents 7.00pm – 9.00pm.
lkennedy@epilepsy.ie Babysitters but NOT for Professionals of Children recently diagnosed with Letterkenny: STEPS Self-
East There is no charge but places must be Epilepsy Management Programme for
Tel: 01 - 4557500 booked by contacting Niamh in the Carmelite Community Centre, 56 Adults with Epilepsy
Edel Curran, Carina Fitzgerald Cork Office Aungier St Station House Hotel, Letterkenny
ecurran@epilepsy.ie Cork: Information Sessions on Wednesday October 17th from Monday 3rd September for six
cfitzgerald@epilepsy.ie Epilepsy Awareness for Teachers 10.00am – 1.00pm Mondays
North-East and SNAs & 6.00pm – 9.00pm.
Tel: 042 - 9337585 Tuesday 9th October - Cork Education Carmelite Community Centre, 56 Letterkenny: Epilepsy Awareness
Mary Baker Support Centre Aungier St Teachers & SNAs Seminar
mbaker@epilepsy.ie Tuesday 16th October - West Cork Monday November 26th Station House Hotel, Letterkenny, Co.
Hotel, Skibereen 6.00pm – 9.00pm Donegal
Midlands
4.30pm Tuesday 18th September
Tel 057 9346790
Cliona Molloy Please contact Cork Education MIDLANDS 7.00pm – 9.00pm
cmolloy@epilepsy.ie Support Centre and West Cork Leitrim: Epilepsy Awareness
Education Centre for bookings. Tullamore: Women’s Seminar
South-East Charleville Centre, Tullamore Teachers & SNAs Seminar
Tel: 0567789904 Education Centre Marymount,
Miriam Gray KERRY September 12th
7.00pm – 9.00pm Carrick on Shannon, Co. Leitrim
mgray@epilepsy.ie Tuesday 9th October
Support group for people with Laois: Outreach Service 6.30pm - 8.30pm
Mid-West epilepsy Citizens Information Centre, Portlaoise
Tel: 061 - 313773
Veronica Bon
Killarney office from 10.30am, on the
following dates 19th September,24th
September 24th NORTH-EAST
Tullamore: Innerwise for Adults
vbon@epilepsy.ie October, 21st November and 12th with Epilepsy INNERWISE One Day Workshop
Kerry December. Charleville Centre, Tullamore Swords: STEPS Self-Management
Tel: 064 6630301 Support meetings for parents of October 3rd for 4 Wednesdays programme for people with
Kathryn Foley children with epilepsy 6.30pm to 9pm epilepsy
kfoley@epilepsy.ie Tuesday 11th September and Tuesday Starting Tuesday September 18th
Tullamore: Teachers & SNA Seminar
West 4th December from 10.30am. Charleville Centre, Tullamore 6 week programme every Tuesday
Tel: 091-587640 Teachers information evening on October 18th evening in Swords
Edel Killarney Epilepsy 7.00pm to 8.30pm 6.00pm – 9.00pm.
ekillarney@epilepsy.ie Monday 24th September at the Castleblaney: Nurse led discussion
Tullamore: Christmas Coffee
North-West Education centre, IT Tralee from Morning and Q&A for parents of children
Tel: 074 9168725 4.30pm -6pm Charleville Centre, Tullamore with epilepsy
Agnes Mooney Family morning at the Playdium, December 5th Iontas Centre, Castleblaney, Co.
amooney@epilepsy.ie Tralee 11.00am – 1.00pm Monaghan
Tuesday 30th October from 9.30am. Wednesday 21st November
CORK Outreach appointments available on SOUTH-EAST 6.00pm
the 1st 2nd and 4th Monday of each
Cork: Parents STEPS self- months at University hospital Kerry. Kilkenny: Epilepsy Awareness WEST
management programme & the Administration of Buccal
Public BM training day in Killarney on Midazolam, Mayo: Epilepsy Nurse Talk
The Vienna Woods Hotel, Cork
the 8th November. Springhill Court Hotel Waterford Rd, Mayo Education Centre
September 11th, 18th and 25th
6.45 pm to 9.15pm Kilkenny Friday, Nov 2nd
EAST Wednesday 19th September 10.00am – 2.00pm
Cork: Support Group for Parents of
Children with Epilepsy 9.00am - 4.00pm
Bishopstown GAA Club
Swords: STEPS Self-management MID-WEST
programme for People with
17th October and 28th November Epilepsy
NORTH-WEST Limerick: Thursday 20th September,
7.30pm Carnegie Court Hotel, Swords Time: 5.30 - 7.30pm – Venue: Limerick
Sligo: Outreach Service
Please contact Niamh for further Tuesday September 18th for 6 weeks Education Centre, Marshall House,
Sligo Office
information 6.00pm – 9.00pm Dooradoyle, Co. Limerick
September 26th 10.00am - 12.00pm
Cork: Innerwise Day for Adults with Dublin: STEPS Self-management October 23rd 10.30am - 12.30pm Tipperary: Thursday 13th September,
epilepsy programme for People with November 14th 10.30am - 12.30pm Time: 19.00-20.30
The Rochestown Park Hotel, Cork Epilepsy December 11th 10.30am - 12.30pm Venue: Anner Hotel, Thurles, Co.
Saturday September 15th Carmelite Community Centre, 56 Tipperary (venue TBC)
Donegal: Neurology Out patients Buccal Midazalom Demonstration:
10.00am – 4.00pm Aungier Street Clinic Clare Education Centre, Kilrush Road,
A day of mindfulness, meditation and Monday September 24th for 6 weeks Out Patients, Scally House, Letterkenny Ennis.
self-development 6.00pm – 9.00pm Wednesday 17th October 2018 11th October
Cork: Support Group for Adults Wednesday 12th December 2018
with Epilepsy 9.30am-4.00pm.
Dublin: Parents STEPS Self- Letterkenny: Parents Support
Bru Columbanus, Wilton BM in Limerick education Centre.
management Programme for Group
Tuesday 2nd October 17th October
Parents Epilepsy Ireland Office
7.15pm 10.00am – 12pm.
Carmelite Community Centre, 56 11th September
Please contact Niamh for further Aungier Street 7.00pm – 9.00pm
information Monday October 1st for 4 weeks
6.00pm – 9.00pm
14Address: 249 Crumlin Road, Dublin 12. Tel: 01-4557500
Email: info@epilepsy.ie Web: www.epilepsy.ie
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15All-Cash
Mega Raffle
2018
1st Prize €2,000
2nd Prize:
€1,000
3rd Prize: €500
Seller’s Prize:
€200
Tickets just €3
Please do what you can to help. Draw: 16th November 2018
Every euro raised helps us continue our (Epilepsy Ireland Head Office,
249 Crumlin Rd, Dublin 12)
work for and on behalf of people with
Permit issued by Inspector M. Cryan, Dublin
epilepsy in Ireland. Metropolitan Region to Peter Murphy, C/o Epilepsy
Ireland, 10th August 2018. Winners will be published
on epilepsy.ie and notified week commencing
November 19th 2018.
Return this slip with your ticket stubs and proceeds in the freepost
envelope provided by: Wednesday 14th November 2018
Name ____________________________________________________________________ ORDER MORE TICKETS
Address ___________________________________________________________________ • Phone 01 4557500
Tel No _________________________ Email ______________________________________ • Email info@epilepsy.ie
Number of tickets sold _________ Total Enclosed €________________ • Return this slip to us in the
FREEPOST envelope
Please send me ______ extra books of tickets (10 tickets per book)
Epilepsy Ireland
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