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e n Brainwave - The Irish Epilepsy Association Issue 53 Spring 2011 epilepsy news First ever European Epilepsy Day raises awareness In this issue: Brain Awareness Week 2011, March 7th-13th New driving regulations introduced The Impact of Epilepsy on Quality of Life My Education and my epilepsy by Maria Carty-Mole Review of 2010 Rebecca (5) and Christopher (5) from senior infants in St Endaʼs Primary School, Whitefriar Street, Dublin with 2FMʼs Rick OʼShea, patron of Brainwave at the launch of European Epilepsy Day on February 14th.

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Page 1: Brainwave New II

enBrainwave - The Irish Epilepsy Association Issue 53 Spring 2011

epilepsy newsFirst ever European Epilepsy Dayraises awareness

In this issue:Brain Awareness Week 2011, March 7th-13thNew driving regulations introducedThe Impact of Epilepsy on Quality of Life My Education and my epilepsy by Maria Carty-MoleReview of 2010

Rebecca (5) and Christopher (5) from senior infants in St Endaʼs Primary School, Whitefriar Street, Dublin with 2FMʼs Rick OʼShea, patron of Brainwave atthe launch of European Epilepsy Day on February 14th.

Page 2: Brainwave New II

Contents2. European Epilepsy Day in Ireland3. European Epilepsy Day in Europe4. Brain Awareness Week5. New driving regulations6. My epilepsy and my education, by

Maria Carty-Mole8. 2010 Picture review10. Epilepsy & Quality of Life11. Budget 201112. Fundraising14. Regional News

European Epilepsy Day 2011 in Ireland

To mark the first ever European Epilepsy Dayon February 14th (the feast day of StValentine, patron saint of epilepsy),Brainwave kicked off the “Seizure Aware”campaign to improve the general publicʼsunderstanding of epilepsy and first aid forseizures.The analogy of a computer crashing wasselected as the theme for the campaign andover 350 radio ads were placed on Today FM,Newstalk and RTE as well as on 16 localstations. The radio ad, voiced by BrainwaveʼsPatron, 2FM presenter Rick OʼSheacompared what happens in the brain during a

seizure to what happens to a computer whenit crashes, an analogy often used to givepeople a snapshot understanding of what aseizure approximates. The ads began on February 1st and ran untilFebruary 14th. Following this, the radio adwas used as the basis of a new TV ad to runon Setanta between February and April.The ads encourage people to visit epilepsy.ieto become Seizure Aware. A new micro-sitewas created for this purpose with basicinformation on epilepsy and on subjects suchas what to do in the event of someone havinga seizure. Information was presented both intext and through the use of short video clips.During the period of the campaign the numberof visitors to the site increased four-fold withalmost 5,000 visits recorded on the site andover 25,000 pages viewed.Brainwave also launched pages on Facebookand Twitter to mark EED. We hope that thesenew media will play a major role in the work ofBrainwave in the coming years.Unfortunately opportunities for newspaper, TVand radio coverage of EED were restricteddue to the election but articles appeared in theIrish Times and the Star as well as radiointerviews on Radio 1 and many localstations. A photocall also took place, featuringRick O'Shea and the children of St Endaʼsprimary school, Whitefriar St, beside theCarmelite Church where St Valentineʼs relicsare kept (see Pics 1 and 2).

Brainwaveʼs Midlands office held a well-attended information evening at the TullamoreCourt Hotel with Clinical Epilepsy NurseSpecialist Denise Cunningham (pic 3).Meanwhile, students from the Training ForSuccess programme gave an EpilepsyAwareness presentation in the Institute ofTechnology, Sligo (pic 4). The presentationwas open to all students and staff of theinstitute. An open day was held at theBrainwave offices in Dublin and Cork. Belowis young Ailbhe Burns from Cork reading upon her epilepsy (pic 5).

Brainwave The Irish Epilepsy Association249 Crumlin Road, Dublin 12Tel: 01 4557500Fax: 01 4557013Email: [email protected]: www.epilepsy.ie Registered Charity Number: 6170

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Launch of EED, Strasbourg

EED also coincided with the annual StValentineʼs roses fundraising appeal.Brainwave was also chosen as the charitypartner for the Valentineʼs Fest event atCitywest Hotel, Dublin.All in all, a very busy and successful first everEuropean Epilepsy Day. Roll on 2012!We would like to thank the following peoplefor donating their time, services and expertisein support of EED:• Tony, Judy and all at Young Advertising • Brian and the team at Setanta Sports• The ever-obliging Rick OʼShea• Dr Norman Delanty• All our media and fundraising volunteers • The staff and pupils of St Endaʼs school

Help us raise epilepsy awarenessOne of Brainwaveʼs key objectives is toimprove public understanding of epilepsy inorder to eliminate stigma and discrimination.European Epilepsy Day may have passed,but we can all keep up the good work. Hereʼsjust a few things you can do to help:• Join us on Facebook and Twitter and help

spread the word• Download and distribute our Seizure

Aware poster which can be displayed inworkplaces, schools, communitycentres etc

• Ask your friends, family and colleagues towatch our seizure-aware videos onepilepsy.ie and Youtube

• Take part in fundraising events ororganise your own fundraiser

• Become a Brainwave Media Volunteer(call 01 4557500 for info)

Join us online

Seizure Aware site:www.epilepsy.ie/go/seizureaware

Facebook:Search for

“Brainwave The Irish Epilepsy Association”

Twitter: www.twitter.com/brainwave_irl

YouTube:www.youtube.com/BrainwaveEpilepsy

European Epilepsy Day was officiallylaunched at the European Parliament,Strasbourg on February 14th.Representatives of 26 epilepsy organisationsfrom across the continent, includingBrainwave, came together to raise awarenessamong European politicians.On 15th February, a series of meetings tookplace between the epilepsy groups and theirnational MEPs, providing an excellentopportunity to make MEPs more aware of theproblems and difficulties faced by the sixmillion people with epilepsy in Europe.Brainwave CEO and IBE President MikeGlynn, along with the President of the ILAE,Nico Moshe held meetings with two keyCommissioners – John Dalli, Commissionerfor Health and Public Policy and MáireGeoghegan-Quinn, Commissioner forResearch, Innovation and Science. Thefocus of these meetings was to highlight theneed for research and education to improveservices for people with epilepsy.

Also on February 15th, a number of MEPsattended a lunch discussion on epilepsyhosted by Irish MEP Gay Mitchell. Thisprovided another opportunity for raisingepilepsy awareness and the discussionshighlighted MEPs interest in learning moreabout the problems faced by people withepilepsy.

A poster exhibition “The Many Faces ofEpilepsy” was also organised, attracting over30 MEPs. EU Vice President EdwardMcMillan-Scott opened the exhibition whichwas located in a busy gallery through whichMEPs walk from their offices to the ParliamentChamber several times each day.Irish MEP Jim Higgins spoke in theParliament about EED, referring to thespecific problems faced by people in Irelandwith epilepsy. Mr Higgins called for moreepilepsy research and for greater sharing ofdata and best practice across Europe. On theback cover you can see the flyer thatBrainwave distributed to MEPs in Strasbourghighlighting some of the key epilepsy issuesin Ireland.

Irish MEPs Sean Kelly, MaireadMcGuinness, Gay Mitchell and Jim

Higgins supported European Epilepsy DayCommissioner Maire Geoghegan Quinn(centre) is presented with a memento of

European Epilepsy Day by IBE and ILAE.

Brainwave CEO & IBE President, MikeGlynn at the launch of European

Epilepsy Day in Strasbourg

Gay Mitchell MEP hosted a lunchdiscussion on epilepsy for MEPs

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www.epilepsy.ie

Brain Awareness Week: March 7th – 13th

Thinking Ahead Campaign

The Neurological Alliance of IrelandThinking Ahead campaign, launched in2010 continues to lobby government andpolicy makers on behalf of people withneurological conditions to protect andprioritise the development of neurologicalservices.Neurological conditions, including epilepsy,affect over 17% of our population. The lackof access to services and long waiting listsare well known but the crisis facing thecountry has threatened even the basicservices that do exist. Furthermore,charities that provide crucial supports topeople with neurological conditionsincluding Brainwave have had significantfunding cuts in the past two years, furtherthreatening services.To date in 2011, Thinking Ahead has: • Organised a pre-election campaign to

urge all political parties to protect andprioritise neurological care. Almost 90candidates signed up to support thecause

• Completed a survey on Experiences ofNeurological Care Services (see below)

• Launched the www.thinkingahead.iewebsite

• Engaged in a public awarenesscampaign explaining why services needto be prioritised

During Brain Awareness Week, a majorconference will be held in Dublin to highlightThinking Ahead and to launch NAIʼs ActionPlan for Neurological Care.

Thinking Ahead for Neurological CareTuesday, March 8th 2011Radisson Hotel, Golden Lane, Dublin 8The conference will feature presentations from • Dr Barry White, National Director of

Clinical Care, HSE

• Dr Aine Carroll, Consultant inRehabilitation Medicine

• Dr Colin Doherty, National Clinical Leadfor Epilepsy

• Dr Tim Lynch, National Clinical Lead forOutpatient Neurology

• NAI groups and people living withneurological conditions

The Action Plan for Neurological Care willbe launched by Prof. Orla Hardiman,Consultant Neurologist and AnneWinslow, Chair of NAI. The Plan willclearly outline how the new governmentmust tackle the neurological health crisis.We will have further details of the ActionPlan in the next issue of Epilepsy News.For more information, seewww.thinkingahead.ie.

NAI Survey on Experiences ofNeurological Care ServicesNAI recently conducted the first nationwidesurvey on state of neurological care. Thestudy featured over 430 people withneurological conditions. Among its findingsare:• 38% of people waited longer than 6

months to be diagnosed• 42% experienced more than 6 month

delay in receiving vital services• 58% identified shorter waiting times to

see a consultant as the change thatwould have greatest impact

• 81% view voluntary organisations asessential or very important in providingservices and support. Irish charitiessave the state millions of euro each yearby subsidising the cost of neurologicalcare through fundraising for vitalservices e.g. specialist nurses.

• A small number of respondents reportedthat they could not access certainservices at all. Almost a third could notaccess neuropsychology services whilemore than one fifth couldn't getspecialist nurse or social work services.

Prof. Orla Hardiman, ConsultantNeurologist in Beaumont Hospital hasdescribed the findings as “an indictment ofthe Irish health system and evidence of amounting crisis in neurological care. Thenext government must make neurologicalcare their top priority for health.”For further information, visitwww.thinkingahead.ie

Brainwave BAW Events

Epilepsy: Clinical Update

A one day conference for healthprofessionals organised in associationwith the Royal Society of Medicine(Ireland Region) and focusing onpaediatric epilepsy.

Friday 11 March 2011The Gresham Hotel, O'Connell Street,Dublin9.15am -4.30pmSpeakers include:• Dr David Webb• Dr Bryan Lynch• Dr Cathy Madigan• Dr Joyce Senior• Dr Sandya Tirupathi• Ms Ann Connolly• Dr Danny Costello• Ms Emma BeamishThis meeting will provide an update onsome important issues of diagnosis andtreatment of epilepsy. Social andemployment consequences of epilepsywill also be considered.The programme is intended particularlyfor all those working in epilepsy clinics,general physicians and generalpractitioners, and also for generalneurologists and trainees.Full programme and fees on epilepsy.ie

North East YouthConference“Putting Epilepsy in its place”Saturday 12th March, 10am – 4pmCavan Crystal Hotel, Dublin Road, CavanFull programme on epilepsy.ie.

Galway Youth Conference"Epilepsy and its Effects on YoungPeople"Saturday March 12th, 10am – 4.30pmHarbour Hotel, New Dock Rd, GalwayFull programme on epilepsy.ie

For a full list of events taking placearound the country for Brain AwarenessWeek, see pages 14-15.

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In December, the Irish government finallyintroduced the necessary amendments toour driving regulations in order to bringthem into line with European CommissionDirective 2009/112/EC. These changes should have beenintroduced before the end of August 2010and Brainwave had continuously pressuredthe Department of Transport and the RoadSafety Authority to make the necessarychanges. We are pleased that the changeshave now been made.Full details of the regulations may be seenon the Road Safety Authority websitewww.rsa.ie under the heading MedicalAspects of Driver Licensing. The main changes include differentregulations in regard to people who havesleep seizures only, for people whoseseizures do not involve the loss ofconsciousness and around changes ofmedication, provoked seizures and firstseizures.A summary of the main points are asfollows:DefinitionsEpilepsy is defined in the regulations as “acommon medical disorder characterised byrecurrent seizures….as defined by havinghad 2 or more epileptic seizures less thanfive years apart”. A Provoked epileptic seizure is defined as“a seizure which has a recognisablecausative factor that is avoidable”.Group 1: Cars, Light Vans andMotorcyclesThe main seizure freedom period forpersonal driving in categories A1, A, B, EB,M or W (car light van or motorcycle)remains the same at one year of seizurefreedom.All drivers with epilepsy should be underannual licence review until they have beenseizure free for a period of at least fiveyears. Persons with epilepsy will not meetthe criteria for unconditional licensing (10year licence) and notification should begiven to the licensing authority.Provoked seizuresA person who has had a provoked epilepticseizure due to a recognisable provokingfactor that is unlikely to recur at the wheelmay be declared able to drive on anindividual basis subject to neurologicalopinion. (This was previously a six monthban) Sleep seizuresPersons who have seizures exclusively in

their sleep they may be declared fit to driveonce this pattern has been established forno less than one year (previously twoyears). If a further occurrence of a seizurehappens in waking, a one-year seizurefreedom period is required. Seizures without influence onconsciousness or the ability to act Persons with who have never had anyseizures other than seizures which havebeen demonstrated to affect neitherconsciousness nor cause any functionalimpairment can be declared fit to drive oncethis pattern has been established for noless than one year (this was previouslysubject to neurological opinion). If there isan occurrence of any other kind of seizure,then a one-year seizure freedom period isrequired. Initial or isolated seizuresA person who has had an initial seizure orloss of consciousness should be advisednot to drive and a specialist report isrequired regarding the period of drivingprohibition and follow up to be undertaken. First or single unprovoked seizuresA person who has had a first unprovokedepileptic seizure may be declared fit to driveafter a period of six months seizure freedomwith an appropriate medical assessment,preferably a neurological assessment. Seizures associated with a physician-directed change or reduction of anti-epileptic therapyIn such cases the person may be advisednot to drive from the beginning of the periodof withdrawal and for six months after the

New Driving Regulations implementedstopping of treatment. Seizures which occurduring the physician-advised change orwithdrawal of medication require threemonths off driving if previously effectivetreatment is reinstated. Surgery In cases where a person has had curativeepilepsy surgery, the seizure freedomperiod prior to licensing is the same as themain seizure freedom period for epilepsyi.e. one year.Group 2: Lorries, Buses, Heavy GoodsVehiclesIn the case of applicants with epilepsy forlicensing in respect of heavy goods vehiclesC1, C, D1, D, EC1, EC, ED1 or ED, the newregulations permit for persons to belicensed to drive in these categoriesprovided 10 years of seizure freedom havebeen achieved without the aid of anti-epileptic drugs (previously there was apermanent blanket ban) A permit may be granted in less time in thecase of those with good prognosticindicators and in cases of juvenile epilepsy. Appropriate medical follow up must becompleted and satisfactory results achievedon neurological investigations. All personsare to be under licence review until theyhave been seizure free for at least fiveyears.Provoked seizuresPersons who have had a provoked seizuredue to a recognisable provoking factor thatis unlikely to recur at the wheel may bedeclared eligible to drive on an individualbasis subject to neurological opinion withappropriate assessments having beencompleted after the acute episode.First or single unprovoked seizuresThe person may be declared fit to drive inthese categories once five years seizurefreedom has been achieved without the aidof anti-epileptic drugs. Drivers with goodprognostic indicators may drive sooner. Seizures due to drug or alcohol misuse,sleep deprivation or structural abnormalityare not considered provoked seizures forlicensing purposes. Reports of seizures dueto side effects of prescribed medication donot automatically imply that such events willbe considered as provoked.For full details and a detailed list of whatconstitutes a provoked seizure for thepurposes of the regulations, see:www.rsa.ie Medical Aspects of DriverLicensing - Epilepsy: Group 2.

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My Epilepsy and My Education

By Maria Carty-Mole, Brainwave member, Dublin

“Is it contagious?!”

This reaction from a fellow maths student atschool is by far the best that I have receivedwhen telling anyone that I have epilepsy. Iwas genuinely amused and was able to talklight-heartedly with the guy, explaining to himthat as far as we know, epilepsy is notcontagious and therefore it cannot be passedon to fellow schoolmates.

One thing epilepsy may have an impact on,however, is a young personʼs ability to get themost out of education. For some it is not aproblem, but for others, frequent absencefrom school or college due to being inhospital; stress, bullying or low self-esteem; aloss in short or long term memory; side effectsfrom medication being taken; these are allchallenges that some students may have toface. However, with the right support andactions, these difficulties may be overcome.

When I was 15, I was diagnosed with partialonset epilepsy after experiencing a full tonic-clonic (grand-mal) seizure on holiday with myfamily. I was prescribed my first anti-epilepsydrug (AED). From then on I had no tonic-clonic attacks but I still regularly experiencedpartial seizures, about one every fortnight. Iwould stay standing or sitting, but would loseawareness and stare into space quietly for acouple of minutes before recovering – a veryslow process which usually included sleepingfor a few minutes.

I had always been a dedicated student andhad prided myself on getting good grades, butat this time things began to get tough. After ayear, as the dosage went up, I started tostruggle at school. I had difficulty inprocessing and remembering new material, Iwas often dazed in class, and my marks intests went down significantly. I was worried,because my Leaving Certificate exams wereapproaching.

What was most irritating was that manypeople believed that my new lower markswere nothing to do with the side effects of mymedication, and that maybe I had never beenthat good at school anyway. But my parentswere amazingly supportive and insisted that Iseek a different drug. Over the next few years,two other medications were tested, butneither was much better.

In the end we settled on the fourth drug wetried in conjunction with a Low GlycaemicIndex Diet and stress management via EEGbiofeedback. The improvement wasshocking. While I still felt tired directly afterhaving a seizure, I was no longer sluggishand dull all the time and I was able toconcentrate again. My memory improved, mygrades went back up and friends told me thatI was much sharper and livelier.

This shows that it is important for a studentnot to give up hope and self-confidence.

www.epilepsy.ie

Feeling drowsy, depressed and tired are allvery common side effects of medication andstudents shouldnʼt just attribute such featuresto themselves and their own personality.

One place where it is essential to look forsupport is from the educational institution inwhich a student is studying. As soon as I wasdiagnosed, my parents made a specialappointment with the schoolʼs headmasterwho was extremely considerate. Theteachers were happy to just let me sit in classand quietly go through my seizure-and-sleepprocess. They understood why my resultswere suffering and they were willing to explainthings to me a second time or when I hadbeen out of school.

Most importantly, it was through the schoolthat I was able to obtain a private room for myLeaving Cert exams, which meant that if I wasto have a seizure during an exam I would begiven extra time to sleep and recover (Note:This is called Reasonable Accommodations,see below). This was a huge weight off myshoulders, as up until that point I was surethat I would fail an exam if I had a seizureduring it.

Such support was continued through thirdlevel education. I studied at the NationalUniversity of Ireland Maynooth and learningfrom my experience at school, I overcame myslight embarrassment and made sure tocontact the Disability Department and registerwith them at the beginning of the first year.

They couldnʼt have been more helpful. Theylent me a digital voice recorder which I couldturn on when I felt a seizure coming on in alecture, and it would record the rest of theclass so that I could listen to the recordinglater and catch up. When I had been inhospital or ill for a while they offered me anextension on due dates for essays, as well as

A nervous Maria prepares for her first day at secondary school!

Maria (3rd from left) with friends in secondary school

Seek support fromyour school. Inschool, my

headmaster andteachers wereextremely

considerate andunderstanding of my

seizures

After a year onmedication, Ibegan to have

difficultyremembering newmaterial and mymarks in testswent down

Page 7: Brainwave New II

a private tutor to help me catch up on missedlectures. They also allowed me time to sit andsleep in an exam when I had a seizure, aswell as slight extra time in every exam. Thiswas because a Neuropsychological test thatI had taken showed that because my epilepsywas based in my left temporal lobe, I hadsome difficulty finding words from day-to-day.

As long as a student has professional reportsfrom doctors or consultants as proof of theirclaims, educational institutions will be morethan happy to help.

Lastly, when we are young with epilepsy, itcan be extremely daunting trying to cope withtelling other people at school or college aboutit. We have all been bullied at some point inour lives, and the reason that it happens isbecause we think we lack power. Any time Itold a schoolmate about my epilepsy withconfidence, making light of it, they received itin that way too. Hiding it implies that it issomething of which we should be ashamed. It

My Epilepsy and My Education

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takes guts to start talking about it the first fewtimes, but I found that twiddling with theidentity bracelet that I wear was always agood way of bringing it to the other personʼsattention and bringing the topic intoconversation.

We shouldnʼt forget that many other peoplehave health issues too – along my way Idiscovered other students that secretlysuffered from diabetes, cystic fibrosis,scoliosis and damaged nerves. Oneschoolmate even had epilepsy too, and hadbeen too terrified to tell anyone. He wasrelieved to be able to talk to me about it. Also,we must be practical – our schoolmates needto be prepared so that they know what to doif we have a seizure.

I am now at the end of my full time education.Aged 21, I am thrilled to have just graduatedfrom NUI Maynooth with a degree in MediaStudies and English and I have secured a jobin a media agency as a TV buyer. I believe that with determination, as well assupport and understanding from friends,family and the institutions at which we study,it is possible to tackle epilepsy and not let ittake over our education. Smiling? Now thatʼs contagious!

ReasonableAccommodationin State Exams

Secondary school students withepilepsy or other disabilities mayhave special arrangements madefor them while sitting Stateexaminations such as the LeavingCertificate and Junior Certificate.Candidates can apply through theirschool. Examples of reasonableaccommodation may include takingthe exam in a separate room, re-sitting in the event of a seizure orextra time to complete theexamination. In addition, your school has theauthority to make special provisionsfor students with special needsduring State exams. Exampleswould include taking medicine, foodor drinks into the examination centrewhere this is required for medicalreasons or granting breaks or restperiods in each examination sessionas warranted by your physical ormedical condition. For more information, contact theState Examinations Commission,Cornamaddy, Athlone, Co Westmeath090 644 2700 www.examinations.ie Other useful links for studentsCAO: www.cao.ie DARE: www.accesscollege.ie

Social Get-together

Tired of being the only one withepilepsy? If you're under 30 and feellike having some craic with otherswho understand if you can't drive orwhy you take medication, Maria ishoping to get young people withepilepsy together to organise someoutings. She'd love to hear from you. If you'reinterested, please contact her [email protected].

Tell your story

If you would like to have your ownstory featured in Epilepsy News,please get in touch with Peter at 01455 7500 or email [email protected] information.

When I told myschoolmates aboutmy epilepsy withconfidence, theyreceived it well.

Hiding it implies thatit is something to be

ashamed of

”Maria graduated from NUI Maynooth in 2010

Maria in New York with two NYCpolicemen. Maria made sure to

go travelling after she got her degree, butadvises that it is not done alone.

Our schoolmatesneed to be preparedso that they knowwhat to do if wehave a seizure

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www.epilepsy.ie

2010 Photo Review

1: Pictured at the “Young Adult with Epilepsy”public meeting in March during BrainAwareness Week are (l-r) Dr. DiarmuidOʼShea, RCPI; Dr Norman Delanty,Consultant Neurologist; Dr. John Kirker,Brainwave President; Emma Beamish,Brainwave member; Maire White, NurseSpecialist in Epilepsy; Sharon Ni Bheolain,RTE Presenter; Paul Sharkey, Brainwave; DrNiall Pender, Neuropsychologist and DrDanny Costello, Consultant Neurologist.

2: Practice Nurses who attended thePractice Nurses Annual Conference inBallybofey, Co Donegal in 2010, with Agnes

Mooney CRO for Brainwave in the NorthWest.

3: Attending Brainwaveʼs Film Night at theMansion House during National EpilepsyWeek (Front) Dr. Colin Doherty, consultantneurologist; Aled Smith, film director; AudreyMurphy, Brainwave board member; AislingFarrell, Brainwave Director of Services.(Back) Mike Glynn Brainwave CEO; DeniseCunningham, Epilepsy Specialist Nurse.

4: We were delighted with the huge turnoutof ladies (and some gentlemen!) supportingBrainwave in the 2010 Cork mini-marathon

on 26th September. A large group ofBrainwave supporters travelled fromKillarney to join the fun.

5: 2010 saw the launch of BrainwaveʼsNursesʼ Information Pack, distributed tothousands of nurses across the country. Thepack was launched during National EpilepsyWeek in May.

6: Epilepsy Awareness and BuccalMidazolam training for health professionalscontinued throughout 2010. The photosshow participants in just two of the coursesin Letterkenny and Limerick.

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2010 Photo Review

7: Brainwaveʼs National Conference 2010,“Epilepsy and the Family”, was held in theAshling Hotel, Dublin in October. Dr JohnLynch was the keynote speaker. For the firsttime, the main presentations were broadcastlive on the internet and recordings are stillavailable on epilepsy.ie.

8: Just some of the many women who

represented Brainwave in the 2010 DublinWomenʼs mini-marathon on a cold, wet JuneBank Holiday.

9: One of the largest fundraising events insupport of Brainwave in 2010 was theinaugural Tour De Gaggs, a cycle from Corkto Roscommon organised in memory of AlanGallagher from Roscommon, who died as a

result of SUDEP in 2009. Over €20,000 wasraised thanks to the efforts of the Gallagherfamily and Alanʼs friends.

10: The Brainwave Waterford support groupcelebrated its 21st birthday in 2011 with areception hosted by the Lord Mayor in City Hall.

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www.epilepsy.ie

The Impact of Epilepsy on the Quality of Life of

by Denise Cunningham,Clinical Nurse Specialist inEpilepsy Services

Brainwave & AMNCH, Tallaght

In 2009-2010, as partof her MSc inEpilepsystudies,DeniseCunningham,ClinicalNurseSpecialist inEpilepsyServicesundertook astudy toinvestigate

the quality of life of adults with epilepsy inIreland. 350 Brainwave members took partin Deniseʼs study and a summary of theresults of her work are presented below.

Epilepsy is the most common seriousneurological condition, affecting people ofall ages and from all walks of life. It can bea hidden disorder which may have a largeimpact on the quality of life of theindividual and the family. In addition toexperiencing the unpredictability ofseizures, people with epilepsy have tocope with the side effects of antiepilepticdrugs along with the potential difficulties incognition, psychological, emotional andsocial functioning.

The impetus for this study came from myexperiences as a Clinical Nurse Specialistworking with adults with epilepsy andseeing how the condition can have a largeimpact on the quality of life of theindividual, both physical and psychosocial.

My objective in undertaking this study wasto investigate the quality of life of adultswith epilepsy in Ireland.

A postal questionnaire along withinformation on the study and a pre-addressed envelope were sent to 820adults with epilepsy aged 18 years orolder who are members of Brainwave.

A standard 31-item questionnaire calledthe QOLIE-31-P was used to gather theinformation as it is one of the most widelyadopted epilepsy-specific quality of lifequestionnaires used worldwide. TheQOLIE-31-P looks at the key issues mostcommonly identified by people withepilepsy under the following headings:

• Overall Quality of Life• Emotional Well-being• Energy-Fatigue• Cognitive Functioning• Medication Effects• Seizure Worry• Social Functioning

A total of 350 adults with epilepsy repliedand were included in the study. Allresponses were anonymous. There weremore female than male respondents. Themajority of women who replied were in the18-40 age group and the majority of menwere in the 41-60 age group.

In general, participants felt that emotionalwell-being, social functioning,energy/fatigue and seizure worry were theareas which they felt most influenced theiroverall quality of life. When participantswere asked “How good or bad do youthink your health is?” the majority ofresponses were more positive thannegative.

An analysis of the data revealed a lot ofvariation in how people responded to thequestions. However, the following keytrends emerged:

Energy/FatigueRespondents reported a low level ofenergy and fatigue. Women appeared tofind low energy and fatigue moredistressing than men. Poor sleep is acommon complaint that can have a hugeimpact on a personʼs quality of life andability to function. The study found arelationship between Energy/Fatigue andMedication Effects, suggesting that somepeople may be experiencing side effectsto their antiepileptic drugs such asexcessive tiredness which in turn canaffect the personʼs quality of life.

Seizure WorryRespondents indicated high levels ofcontinuous anxiety about having seizures.This is not unexpected as previousinternational studies have reached similarconclusions. Anxiety may result from orbe worsened by psychological reactions,including the unpredictable nature ofepilepsy, restrictions on normal living andactivities, stigmatisation, low self esteemand social rejection. The study found thatpeople in the 18-40 age groups appearedto worry more about hurting andembarrassing themselves during a seizureand their seizures bothered them morecompared to the older age groups.

Cognitive FunctioningCognitive Functioning also had a lowscore in the study with memory difficultiesappearing to distress women more thanmen. Memory is negatively affected byepilepsy and people with epilepsy oftenreport more memory problems comparedto people without epilepsy. The studyfound a relationship between CognitiveFunctioning and Social Functioning,suggesting that poor cognitive functioningcan affect a person obtaining employment,education, driving and engaging in socialactivities.

Social FunctioningThe social functioning scale had a highrate of missing responses for bothquestions regarding “driving or othertransport” and “working” probablyreflecting restrictions caused to peoplewith epilepsy. This is similar to otherinternational studies using thisquestionnaire. People with epilepsy inIreland have to be one year seizure freebefore they are legally allowed to drive.There are some exceptions to the oneyear rule in respect of provoked seizures,nocturnal seizures or simple partialseizures. Eligibility under theseexceptions must be certified by aconsultant neurologist (For furtherinformation see Brainwaveʼs leaflet Drivingand Epilepsy). Getting access to transportespecially for those living in rural Irelandcan pose a problem and therefore canhave an impact on the personʼs ability towork.

Medication EffectsThis study found that younger people inthe age group 18-40 years appeared toworry more about the psychologicaleffects of their antiepileptic drugs andthose in the age group 41-60 years weremore worried about the long term effectsof their antiepileptic drugs. Those in theage group 61 or over appeared not toworry as much about the effects ofantiepileptic drugs compared to those lessthan 60 years.

Emotional WellbeingThis study found the highest score forEmotional Wellbeing indicating that Irishpeople generally have a goodperception of their Emotional Wellbeing.The study found a relationship betweenEmotional Wellbeing and Overall Qualityof Life suggesting that having a goodperception of your emotional wellbeingcan in turn help to improve your qualityof life.

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the Adult Population in Ireland

International ComparisonsAs this is the first Irish study to use theQOLIE-31-P questionnaire, I decided tocompare the Irish results to those fromother countries who used the samequestionnaire. Taking into considerationthe potential pitfalls in making cross-cultural comparisons, I found the Irishstudy results to be similar to both recentAmerican and Spanish studies.

This study has created an awareness ofthe impact of epilepsy on the quality of lifeof adults with epilepsy in Ireland. Theability to live an independent life, to drive,to secure employment, to engage in socialactivities, to feel less anxious, lessstigmatised and psychologically well areall important aspects in the life of a personwith epilepsy.

The study has indicated a pressing needto explore preventative approaches toaddress the concerns of people withepilepsy and to help improve their qualityof life.

In doing so, attention should be paid to thepsychosocial consequences of thecondition. Interventions aimed at reducingpsychological distress and communityinterventions aimed at changing attitudesand behaviours in society to reducestigmatisation would help to improve thequality of life of people with epilepsy. Forexample, the study found that olderpeople appeared to cope better with theirepilepsy than younger people. To redressthis, further support mechanisms foryounger people are needed in the future.

Access to neurology services remainsdifficult for people with epilepsy in Irelandas we have the lowest numbers ofConsultant Neurologists per capita inEurope. As a result, many people withepilepsy, their families and carers aretrying to manage as best they can throughliaison with their GP, BrainwaveʼsCommunity Resource Officers and thethree Epilepsy Nurse Specialists withBrainwave.

Epilepsy is a long term condition whichrequires long term management. This canbe achieved by a joined-up approach fromprimary, secondary and tertiary care aswell as voluntary providers such asBrainwave. A lot of issues can beresolved at primary care level if such ajoined-up approach existed. For example,if a GP sees an epilepsy patient withincreased seizure frequency, it is notalways necessary that the person see a

Neurologist but it is necessary that theyget treated appropriately. If the GP hadaccess to appropriate epilepsy advicelinked to an Epilepsy Nurse, then the longterm prospects for that individual are muchbetter and therefore the quality of life ofthe individual improves. This would alsoresult in savings to the HSE in terms ofhospital admissions and reduced waitinglists.

The Epilepsy Nurse is the link personbetween the person with epilepsy and theneurology service. This is an invaluablelink for the individual as they can contactthe Epilepsy Nurse if they have anyquestions or are having any problems withtheir epilepsy.

However, there are currently only a smallnumber of Epilepsy Nurses in Ireland andthe majority are based in Dublin. My roleas an Epilepsy Nurse incorporates boththe hospital and community but there arecurrently only three of us in the country inthis type of role. Having additionalEpilepsy Nurses would be a cost-effectivemeans in improving epilepsy care inIreland. This study has generated anumber of areas for further research. Oneof these areas involves a study looking athow the role of the Epilepsy Nurseimproves the quality of life of a personwith epilepsy.

AcknowledgementsI would like to thank Brainwave - The IrishEpilepsy Association for the tremendoussupport they have provided to this study. Iwould also like to thank all the members ofBrainwave who participated in thisresearch. Without your involvement, thisresearch would not have been possible.

Denise Cunningham is available onBrainwaveʼs helpline each Wednesdayfrom 9.30 - 13.00.

Note: A number of Brainwave memberswho replied to the questionnairecrossed out the word “fit” and putthe word “seizure” instead.Following this study, I contactedJoyce Cramer, President of theEpilepsy Therapy Project for theQOLIE Development Group andrecommended that the word “fit” bechanged to the word “seizure” forall future research using theQOLIE-31-P as the word “seizure”is a more socially acceptable termthan the word “fit”.

Budget 2011

The following are the changes inentitlements & benefits fromBudget 2011. Full details of all theentitlements mentioned, includingqualification are available onepilepsy.ie.

Disability AllowanceThe basic personal rate is reducedfrom €196 to €188 per week(€312.80 with a qualified adult).

Illness BenefitRate is reduced from €196(personal) to €188 per week(€312.80 with a qualified adult).

Invalidity PensionBasic personal rate is reduced to€193.50 weekly and €331.60 witha qualified adult (under 65).

Disablement Benefit/Occupational Injuries BenefitThe personal rate is reduced to€219 per week.

Carers AllowanceThe weekly rate for this meanstested payment is reduced to €204(aged under 66) while aged 66 andover remains at €239. The weeklyincome disregard is €332.50 for asingle person and €665 for acouple.

Carers BenefitThe basic weekly rate for this shortterm payment of up to two years isreduced to €205.00.

Incapacitated Child Tax CreditIn Budget 2011 the Tax Credit isreduced from €3660 to €3300 perqualifying child.

Home Carers Tax CreditBudget 2011 reduced this creditfrom €900 to €810.

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Fundraising: Upcoming Events

The Alan Gallagher Memorial CycleFrom Cork – RoscommonSaturday April 23rd - Sunday April 24thIn support of Brainwave - The Irish EpilepsyAssociation

The 2nd edition of the Tour De Gaggs in supportof Brainwave will take place this Easterweekend. The inaugural cycle consisting of over30 cyclists took place in May 2010 and raised anamazing €20,617 for Brainwave. Participantscycled from Cork to Roscommon over two days,covering a distance of over 300km.The cycle is held in memory of Alan Gallagher,who passed away as a result of his epilepsy inJanuary 2009. Alan, originally fromRoscommon, attended college at UCC wherethe cycle began. The peloton also passedthrough Limerick where Alan had lived for awhile and Galway, where he worked as aphotographer with the Galway Independent inthe months before his death. Alan was himselfa keen cyclist, and previously cycled fromRoscommon to Cork some years ago.This Easter weekend, Alanʼs friends and familywill again gather in his memory and will onceagain be raising funds for Brainwave

Brainwave would like to thank all the dedicatedparticipants, support crew and fundraisers for allthey have done and continue to do to supportepilepsy. Our thanks in particular to Brian andKevin Gallagher, Alanʼs brothers and to ColmBurke, Niall Harte, Eoghan OʼShea and all theorganising committee for doing such a great job.Weʼd also like to thank Cisco Systems in Galwayfor their support through their matching giftsprogramme, which has helped raise even morefunds for Brainwaveʼs work.A table quiz to support Tour De Gaggs willbe held in Cissie Youngʼs Pub in Cork on Sat26th March. All are welcome!* Given the scale of the event, the organisersrely on people to help out in a number ofdifferent ways. They are currently seeking theassistance of a physiotherapist for this yearʼscycle and also sponsors for food, water andother necessities for participants. If you canhelp, please contact Peter at Brainwave (014557500).Further details:www.tourdegaggs.comFacebook: Search Tour De Gaggs

Dublin Women’s MiniMarathon 2001Bank Holiday Monday,6th June 2011Walk, Run and have some fun! Whetheryouʼre a seasoned athlete or new to it all, youcan have some fun and help Brainwave raisemuch-needed funds by taking part in thisyearʼs Flora Womenʼs Mini-marathon, thebiggest all women's event of its kind in theworld!Why not persuade some friends to join you insupporting Brainwave? You can build up tothe big day by training together andsupporting each other along the way. Brainwaveʼs work depends on the fundraisingefforts of our members and supporters, so ifyou are taking part in this yearʼs mini-marathon, please consider running forBrainwave.

Iʼm interested, what do I do now?1. Register for the mini-marathon online or through

the Evening Herald from March 2nd. 2. Contact Brainwave for your Mini Marathon

Pack. Phone Glenna at 01 4557500 or [email protected].

3. Get training and fundraising! Donʼt forget tocreate an online sponsor card atwww.mycharity.ie.

For more information on the race, visit theofficial site atwww.florawomensminimarathon.ie.

Brainwave Brain TeaserQuiz Night

Thursday May 5thD-two, Harcourt St. Dublin7.30pm€40 per team of four

The first Brain Teaser table quiz night of 2011will take place on 5th May 2011 at D-two inDublin. Including our now-famous music round!Two Brain Teaser nights last year raised over€6,000 for our work, so please continue thegood work! Book your table now to avoiddisappointment... Call Ashley at 01 4557500 oremail [email protected].

Green Your GoodsA new greener way to fundraise

Brainwave fundraisers have a new excitingfundraising tool to support our work! Cork-based company GreenYourGoods.iehave set us up to start accepting old mobilephones, games consoles, iPods & otherelectronic gadgets. Fundraisers can set uptheir own page for free on theGreenYourGoods.ie website which can acceptdonations of old gadgets from all over thecountry. GreenYourGoods will pay forpostage/pickup & convert them into funds forus.Simply go towww.greenyourgoods.ie/fundraising.html toset up your Fundraiser page and raise eco-friendly money for Brainwave! Thereʼs moreinformation about this fantastic new idea onwww.epilepsy.ie or you can also call us at 014557500.

Tour De Gaggs

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Fundraising: Thank You

John & Diarmuid’sIndia Challenge

It's described as the least intelligent thing todo in two weeks, but that did not deter theefforts of two enthusiastic Brainwavefundraisers, John Smyth & Diarmuid Murphy,as they set off in January to conquer anunknown land full of jungles, deserts, smogand wandering cattle: India.Any type of trek is a difficult but setting off ona massive 2,500km trek on board a three-wheeled “glorified lawnmower”, which theylovingly called their tuk-tuk, seems an eventougher task. Taking part in the annual "Rickshaw Run",the lads started from the north west town ofJaisalmer and proceeded down the westcoast passing Mumbai and Goa, beforefinally reaching their destination of Kochi inthe south two weeks later.Travelling at a top speed of 60km/h withoutany backup, support or even tools, the ladstravelled over 200km every day. Thankfullythey were well prepared, and soon got togrips with the crazy driving conditions,avoiding many a close shave along the wayand making lots of new friends. They describe their trip as a tough,sometimes grueling two weeks but a trulyamazing experience. The lads raised over€2,000 for Brainwave during the fundraisingefforts before Christmas. With so manypeople intrigued by the trek, everyone gavegenerously to the cause. They may be totally crackers, but a hugethank you to John and Diarmuid for theiroutstanding work in support of Brainwave!

Valentine’s Fest 2011

Thank you to Rita Kelly and the organisers ofValentineʼs Fest 2011 for selecting Brainwave astheir charity partner at this year's biggestValentine's singles event, held in Citywest, Dublin.Over €800 was raised on the night throughBrainwave's Fun Casino and raffle. Our thanksalso to the Jackpot casino club in Dublin forproviding two of their staff for the fun casino andto Renvyle House, Stena, Dublin PhotographySchool and Athlone Cruisers for donating greatprizes for the raffle.

A Birthday Gift fromAisling

Thanks to everyone who helped the cause onEuropean Epilepsy Day on February 14th. Ourfavourite fundraiser at the moment is definitely10-year old Aisling Baragry from Dublin whosent us a lovely Valentineʼs card and a specialgift for Brainwave to mark the day. Thank youAisling!

Donegal Quiz

Thank you to Kelly and Lucy Mc Carron from CoDonegal who organised a pub quiz in the CenturyBar, Carndonagh recently and raised €855.00 forBrainwave. Thanks also to the Century Bar and toall who supported the quiz on the night. Above,Agnes Mooney, Brainwave receives a chequefrom Kelly and Lucy.

Free Dress Day

Thank you to the first and second classes fromScoil Na Croise Naofa Geashill, Co Offalyrecently held a free dress day in support ofBrainwave .They raised €119 . The event was thebrainchild of 7 yr old Brian Walsh. Our thanks alsoto Principal Michael Hyland and class teacher MsWalsh.

Thank YouAs usual, so many people to thank for their fantastic support…• Everyone around the country (too many to name) who sold roses and

rose pins for Brainwave for the Valentineʼs Rose Appeal. Pictured right are Greg and young Sadhbh Mechan from Wexford who raised €200

• All our members and supporters who helped raise over €8,500 through the sale of Brainwave Christmas Cards last year.

• Paul Ryan, whose table quiz in Dublin raised over €1,000• Mark Bell who raised €700 by doing the Eireman X off-road triathlon• Christian Headley, who raised over €750 in the St Gerardʼs school run• Barbara Mitchell for raising €200 via a school No-Uniform Day in Edenderry.

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Regional Events

East Region(Coʼs Dublin, Kildare, Wicklow)For further information on events in this area, contact:Ina Murphy, CROBrainwave Head Office, 249 Crumlin Rd, Dublin 12 01 4557500 Email: [email protected] & Tue 10am - 6pm; Thur 1.30 pm - 6pm

Upcoming EventsParents Evening - Lifestyle and Quality of Life IssuesBracken Court Hotel, Balbriggan Co. DublinMonday, 7th March7.30pmGuest Speakers: Grainne Griffin, Our Ladyʼs HospitalCrumlin and Sinead Murphy, CESN Brainwave &Beaumount Hospital. Questions and Answers session toaddress Young Adult & Paediatric Issues. A charge of €5will apply to cover cost of tea, coffee & room Hire. ContactIna or Geraldine for info.

North East Region(Coʼs Louth, Meath, Monaghan, Cavan)For further information on events in this area, contact:Noreen OʼDonnell, CROThe Dundalk Club, Roden Place, Dundalk, Co. Louth042 9337585 [email protected], Tue & Wed 9am - 6pm

Upcoming EventsNorth East Youth Conference 2011“Putting Epilepsy in its Place”Saturday, 12th MarchCavan Crystal Hotel, Dublin Road, Cavan10am - 4pmIf you are aged between 16 and 26 and interested in bettermanagement of your epilepsy & a better quality of life, thenthis conference is for you. Speakers include Dr KevinMurphy, Consultant Neurologist Sligo, Dr Sandya Tirupathi,Neurologist Belfast, Dr Cathal McAuliffeNeuropsychologist, and more. Workshops are designed tosuit all needs. Conference Fee including lunch is €20(members) or €30 (non-members). Booking is advised.This conference is being organised by: Noreen O'Donnell,Brainwave North East and Agnes Mooney, BrainwaveNorth West.

CorkFor 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 – 1pmMary Lawlor (CRO for Nth Lee and Nth Cork)Tue/Wed/Fri 9.30am - 5.30pm; Thur 1.30pm - 5.30pm35 Washington St. Cork. Tel: 021 4274774Niamh: [email protected]: [email protected]

Upcoming EventsParents Support Group CorkBishopstown GAA Club, CorkWednesday, 9th March7.30pmFor further information, contact Niamh

Support Group for people with epilepsyWednesday, 9th March Brainwave Cork Office, 35 Washington Street 2.30pmFor further information, contact Mary

Outreach Service, FermoyDate: mid March (date TBC)Please contact Mary for details.

Information Day in Carrigaline Public LibraryTuesday, 29th March10am - 1pm & 2pm - 5pmNiamh Jones, Brainwave CRO will be available to speak topeople on epilepsy-related issues. No appointmentneeded.

Brainwave Information and Support ServiceIn response to members' queries, CRO Niamh Jones willbe available to meet Brainwave members until 8.30pmMonday evenings. Strictly by appointment only.Seminar on EpilepsyThursday, 19th MayCity Centre (venue to be confirmed) 6.30pmGuest Speaker: Dr Danny Costello, ConsultantNeurologist. Further details to follow.

KerryFor further information on events in this area, contact:Kathryn Foley, CRO9/10 The Paddocks, Ballydowney, Killarney064 6630301 [email protected], Tue, Wed 9am - 3.30pm; Thur 9am - 4.30pm

Upcoming EventsNeurology Outpatient ClinicDate: 1st, 2nd and 4th Monday of each month.Kerry General Hospital, Out Patients Department, Room 4.9am-1pmContact Kathryn if you wish to discuss any related epilepsyissues before or after your doctorʼs appointment.

Outreach Service Kerry General HospitalNeurology Clinic, Kerry General HospitalMonday 7th March9am - 1pm

Outreach Service, TraleeTralee Town CentreFrom 1pmPlease contact Kathryn for an appointment.

Ladies Support Group, KillarneyBrainwave office, KillarneyWednesday, 9th March11am

Parents Support GroupTuesday 17th MayTime and Venue: To be confirmed

Epilepsy Awareness and the Administration of BuccalMidazolam Training Day* For health professionals onlyWednesday, 15th JuneBrehon Hotel, Killarney

Midlands(Coʼs Offaly, Laois, Westmeath & Longford)For further information on events in this area, contact:Margaret Bassett, CROc/o OCIL, Clonminch Road, Tullamore, Co. Offaly057 9346790 [email protected], Tue, Wed & Fri 10am to 2.30pm; Thursday 9am to 5pm

Upcoming EventsParents Group - Epilepsy Awareness PresentationWednesday, 9th MarchArden View Resource Centre, TullamoreFor full details, contact Margaret

Parents Support Group MeetingThursday, 10th MarchOCIL Clonminch Rd TullamoreFor full details, contact Margaret

North West(Coʼs Donegal, Sligo and Leitrim)For further information on events in this area, contact:Agnes Mooney, CRODonegal Office: Grand Central Complex, 2nd Floor, Canal Road, Letterkenny, Co. Donegal074 9168725 [email protected] Office: Model & Niland Arts Gallery, The Mall, Sligo071 91 54625Mon, Tue, Wed 9am - 5pm; Thur - 9am - 1pm

Upcoming EventsEpilepsy Nurse HelplineCommunity Epilepsy Specialist Nurse Eithne Cawley isnow available at 071 9141858 every Friday morning.

Letterkenny Neurology Outpatients ClinicDr Kevin Murphy holds a clinic each Wednesday morningin Letterkenny. Agnes Mooney, CRO attends this cliniceach week and will be available for one to one confidentialservice. Meetings by appointment only.

North East Youth Conference 2011“Putting Epilepsy in its Place”Saturday, 12th MarchCavan Crystal Hotel, Dublin Road, Cavan10am -4pmOrganised in conjunction with Brainwaveʼs North EastOffice

Outreach Service, Sligo Date & time: By appointmentSt. Vincent's Business Park, Finisklin Road, SligoOffering one to one support and information about livingwith epilepsy.

Western Region(Coʼs Galway, Mayo, Roscommon)For further information on events in this area, contact:Evelyn Monson Kirby, CROOzanam House, St Augustine Street, Galway091 568180 [email protected], Wed & Thur 9am - 5pm; Fri 9am - 1pm

Upcoming EventsGalway Youth Seminar (17 – 25yrs)Harbour Hotel, New Dock Rd, GalwaySaturday March 12th10am - 4.30pmFor details please, contact Evelyn

Galway Support Group MeetingWestside Resource Centre, Seamus Quirke Road, Galway(To be confirmed)Tuesday, April 5th7.00pm

Epilepsy Awareness & the Administration of BuccalMidazolam Training for Health ProfessionalsHarbour Hotel, New Dock Road, Galway.Thursday, April 14th9am - 5pmFor details please contact Evelyn or Head Office at 014557500

Mid West Region(Coʼs Limerick, Clare and North Tipperary)For further information on events in this area, contact:Anna Kelly, CROSocial Services Centre, Henry St., Limerick061 - 313773. [email protected] 9.30am - 5.00pm; Wed 9.30am - 5.30pm; Thur - 12.00pm - 5.00pm; Fri 11.30am - 3.30pm

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Regional EventsUpcoming EventsOutreach Office EnnisEnnis CIC, Bindon Lane, Bank Place, Ennis, Co. ClareMonday, 7th March10.30am – 4pmPeople with epilepsy, their families or carers or healthprofessionals can make an appointment to discuss theissues surrounding their epilepsy. Each appointment willlast 30 minutes but a booking is essential. For moreinformation or to make an appointment, contact Anna.

Thurles Epilepsy Awareness DayFriday, May 20thAnner Hotel, Thurles11am - 3.45pmEpilepsy Specialist Nurses Maria Keegan & Grainne Griffinfrom Crumlin hospital will present sessions as outlinedbelow.Morning session: 11am - 12.30pmSession 1: Childhood Epilepsy and the Family (for parentsand family members in a group setting)Session 2: Individual appointments available for familiesdealing with complex issues around epilepsy Afternoon session: 2pm - 3.45pmSession 1: Epilepsy and Early Childhood Syndromes (fornurses working with children with epilepsy and othersyndromes)Session 2: Epilepsy Awareness Presentation (for teachers,Special Needs Assistants, Care Workers, Studentsattending pre nursing courses etc)For further information contact Anna Kelly. This AwarenessDay is being organised as a result of 2010 fundraising byThe Thurles Lions Club

Parents Support Group Meeting, LimerickSocial Services Centre, Henry St., LimerickMonday 18th April10.30am -12pmAll are welcome. For further details, contact Anna

South East Region(Coʼs Kilkenny, Carlow, Wexford, Waterford &South Tipperary)For further information on events in this area, contact:Joan Ryan, CROThe Ground Floor, St Canices Hospital056 7784496, [email protected] & Tue 10am - 5pm; Wed & Thur 10am - 4.30pm

Upcoming EventsCoffee Morning, KilkennyPembroke Hotel, Patrick StreetMonday, 7th March10.30 – 12 noonHosted jointly by Headway and Brainwave

Waterford Support Group Meeting Cheshire Home, John's Hill, WaterfordThursday, 10th March. 7.30pm - 9pmPresentation by a pharmacist on the night

Information and Epilepsy Awareness StandWaterford Institute of TechnologyThursday, 10th March, 10am – 4pm

�Brainwave Membership Form

Membership Category

□ 1 Year renewal membership subscription @ €12.70 □ 1 Year New membership subscription @ €12.70

□ 2 Year New membership subscription @ €20.00 (new members only)

* 2 year subscription entitles a new member to a free epi-alert identity bracelet or safety pillow.

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 € ________________________________________________________________________________

□ Tick here if you would like to receive our regular e-mail newsletter. Clearly write your e-mail address in the space above.

□ Tick here if you would like to find out more about volunteering & fundraising for Brainwave

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

New CRO for South EastBrainwave isdelighted towelcome JoanRyan as then e wC o m m u n i t yR e s o u r c eOfficer for theSouth Eastregion.

Joan replacesA n n e t t eRussell whoretired at theend of 2010.

Joan hasworked inc o m m u n i t yb a s e d

services in the disability sector for over 10 years, bothwith people with intellectual disabilities and peoplewith physical and sensory disabilities.

She holds an MSc in Rehabilitation/Counselling fromthe University of Illinois in conjunction with TipperaryInstitute. Her previous role was as a Family SupportOfficer with Aspire, the Asperger Syndrome Associationof Ireland, a post she held from 2006– 2010.

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