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IMNDA Connect NEWS & RESEARCH ISSUE CONNECT 19 Spring 2018 IN THIS ISSUE... l NEWS & RESEARCH l LIVING WITH MND l FUNDRAISING l EDITORS DESK I NEWS & RESEARCH CONTENTS A NOTE FROM 2018 CALENDAR OF EVENTS/ DIARY DATES OUR CEO A NOTE FROM OUR CEO On behalf of the IMNDA, I would like to welcome you to the first Edition of the Connect Magazine for 2018 and it is with a NEWS & RESEARCH 03 sad heart that I say this will be my last insert as I am leaving • International MND/ALS Symposium the IMNDA to take on an entirely new challenge away from Boston by Tracy Hutchin the Community and Voluntary Sector. It has been an absolute pleasure leading the IMNDA for the last five years and we have • Research by Mark Heverin achieved many things, I am leaving with our second Strategic • IMNDA Strategic Plan Plan completed (2017-2020) and in the very capable hands of • GDPR Update a dedicated IMNDA board and passionate IMNDA staff team. I • How to Claim a VAT Refund on Aids & would also like to extend my sincere thanks to all those families Appliances I have met throughout the years it has been an absolute honour advocating and working on your behalf it has been inspirational sharing the journey with you all. LIVING WITH MND 11 • New MND Information Booklet Back to buisness... it has been a busy start of the year; we • ‘Hope’ by Andy McGovern launched our 4th Sponsored Silence Campaign which saw many • Voice Banking with MND of our families taking part. We shared a photo online every day • ‘My Speech’, by Patricia Sweeney throughout the month of February and so far we have raised over €40k. The Good Friday Run was another huge success with • #Voice4MND with Paul Carroll over 650 participants showing their support. We are also thrilled • Roisin Foley’s Story to announce that we have been chosen as the Dublin Airport Authority and Irish Life Charity of the Year. This will see staff from FUNDRAISING 21 both organizations running events for the IMNDA throughout the • Drink Tea for MND 2018 year so it has been a very exciting start to 2018. • The difference we make together, thank you We have also seen a rise in numbers accessing our services and - Mock Wedding in 2017 we provided services to 524 compared to 456 in 2016. As • Get Active for your Association in part of our Strategic Plan and in order to deal with the increase in 2018! numbers we have created a new post, Information and Support • Upcoming Events: Officer. We feel this position will complement our services and - Walk to D-Feet MND provide a great resource to our families. We also launched a new - Croke Park Abseils and more user friendly information leaflet called: An Introduction - FiftyTwo Words to Motor Neurone Disease, for those that are newly diagnosed. - Walk While You Can - VHI Women’s Mini Marathon On a final note I would to extend my heartfelt - Polo in the Park! thank you to the IMNDA Board for all their support, to the IMNDA staff for EDITORS DESK 38 their pure dedication to the IMNDA • In Remembrance community and to Professor Hardiman and her team for their • Staff Updates visionary approach to care and • Corporate Update research. • Awareness Video Appeal • Legacies Best wishes, • Carers Day in Carrick-on-Shannon Aisling Farrell, CEO II DIARY DATES DO SOMETHING SPECIAL IN 2017 DIARY DATES DO SOMETHING SPECIAL IN 2017 th CROKE PARK ABSEILS 07 Hogan Stand, Croke Park Stadium, Dublin OCTth CROKE7th October PARK 2017 ABSEILS 07 Hogan Stand, Croke Park Stadium, Dublin OCTth 7thDUBLIN October CITY 2017 MARATHON 29 Dublin City - 29th October 2017 OCTth DUBLINwww.sseairtricitydublinmarathon.ie CITY MARATHON 29 Dublin City - 29th October 2017 OCTth www.sseairtricitydublinmarathon.ieLIMERICK WOMEN’S MINI MARATHON 29 Limerick City - 29th October 2017 OCTth LIMERICKwww.limerickminimarathon.ie WOMEN’S MINI MARATHON 29 Limerick City - 29th October 2017 OCTth www.limerickminimarathon.ieMEMORIAL SERVICE 25 Capuchin Friary, Church Street, Dublin 7 NOVth MEMORIAL25th November SERVICE 2017 @ 12pm 25 Capuchin Friary, Church Street, Dublin 7 NOVth 25thANNUAL November GRAND 2017 RAFFLE @ 12pm DRAW & CHRISTMAS COFFEE MORNING 13 Richmond Room, Carmichael House, North Brunswick Street, Dublin 7 DECth ANNUALWednesday GRAND 13th December RAFFLE DRAW @ 11:30am & CHRISTMAS COFFEE MORNING 13 Richmond Room, Carmichael House, North Brunswick Street, Dublin 7 DEC Wednesday 13th December @ 11:30am Registering your Fundraising Event Registering your Fundraising Event Please register all fundraising events with the IMNDA before they Irish Motor Neurone Disease Association Pleasetake place register and all ensure fundraising all your events details with (name/address the IMNDA before & event) they IrishColeraine Motor House,Neurone Coleraine Disease St,Association Dublin 7. takePleaseare placeon register the and lodgement ensureall fundraising allslip your when eventsdetails lodging with(name/address proceedsthe IMNDA into before& theevent) bank. they ColeraineIrish Motor House, Neurone Coleraine Disease St, Association Dublin 7 aretake on place the lodgementand ensure slip all yourwhen details lodging (name/address proceeds into &the event) bank. CharityColeraineFreefone: no. House, 18008510. 403 Coleraine 403 Fax: St, 01 Dublin 873 1409 7. To register and receive promo items / lodgement slip etc: are on the lodgement slip when lodging proceeds into the bank. Email: [email protected] To register and receive promo items / lodgement slip etc: Freefone: 1800 403 403 Fax: 0101 8731409873 1409 ToEmail: register [email protected] and receive promo Freefone:items / lodgement 1800 403 slip 403 etc: Email: [email protected]/irishmnd2011 Email: [email protected] Freefone:Email:Thank [email protected] you 1800 for 403 your 403 support Freefone: and co-operation. 1800 403 403 www.facebook.com/irishmnd2011www.facebook.com/irishmnd2011@IMNDA Thank you for your support and co-operation. @IMNDA@IMNDA IMNDA Bank Account details: Disclaimer IMNDA‘Motor Neurone Bank AccountDisease Association’ details: DisclaimerThis newsletter provides information only. The authors have no medical AIB, Capel Street, Dublin 1 qualification whatsoever unless otherwise stated. No responsibility for any ‘Motor Neurone Disease Association’ ContributionsSort Code: 93-13-14 to the Acc next No. 07725002edition of Connect:Thisloss newsletter whatsoever provides caused information to any person only. acting The authorsor refraining have fromno medical action as a AIB, Capel Street, Dublin 1 qualification whatsoever unless otherwise stated. No responsibility for any IBAN:If you would IE32 AIBK like to9313 submit 1407 a 7250 story, 02 photo, or somethingresult of you any would material like into thisshare publication then please or any contact advice the given office. can be accepted Sort Code: 93-13-14 Acc No. 07725002 BIC/SWIFT: AIBKIE2D lossby the whatsoever IMNDA. Medical caused adviceto any shouldperson beacting obtained or refraining on any fromspecific action matter. as a IBAN: IE32 AIBK 9313 1407 7250 02 resultMEDICAL of any PATRON material Dr. inAisling this publication Ryan MB, PhD,or any FRCPI, advice Consultant given can Neurologist be accepted BIC/SWIFT: AIBKIE2D byPATRONS: the IMNDA. Arthur Medical McGuinness advice should be obtained on any specific matter. MEDICALDIRECTORS: PATRON Declan Dr. MacDaid Aisling Ryan (Chairperson), MB, PhD, FRCPI, Alison Consultant Gray (Hon NeurologistTreasurer) PATRONS:Bernie Conolly, Arthur Katie McGuinness Hallissey, Jonathan Healy, Angela Hogan, Orla Clayton Unsubscribe from Newsletter MailingDIRECTORS: Declan MacDaid (Chairperson), Alison Gray (Hon Treasurer) If at any stage, you no longer wish to receive theBernie Connect Conolly, Magazine Katie Hallissey,simply email Jonathan [email protected] Healy, Angelaor call 01-8730422. Hogan, Orla Clayton We will remove you immediately from the mailing. 1 1 IMNDA Bank Account details: Disclaimer ‘Motor Neurone Disease Association’ This newsletter provides information only. The AIB, Capel Street authors have no medical qualification whatsoever Sort Code: 93-13-14 Acc No. 07725002 unless otherwise stated. No responsibility for any IBAN: IE32 AIBK 9313 1407 7250 02 loss whatsoever caused to any person acting or BIC/SWIFT: AIBKIE2D refraining from action as a result of any material in this publication or any advice given can be accepted by the IMNDA. Medical advice should be obtained on any specific matter. MEDICAL PATRON Dr. Aisling Ryan MB, PhD, FRCPI, Consultant Neurologist PATRONS: Arthur McGuinness DIRECTORS: Declan Mac Daid (Chairperson), Alison Gray (Hon Treasurer) Bernie Conolly, Katie Hallissey, Jonathan Healy, Angela Hogan, Orla Clayton, Norman Hughes 1 Irish Motor Neurone Disease Association Events Calendar 2018 The IMNDA would not be here without the wonderful support we receive each year. Seminar September 82%DIARY of our income DATES comes from peopleDO SOMETHINGlike you. • Friday SPECIAL 7th September: IN IMNDA 2017’s AGM, Annual Conference and Patient & Carer Respite Please check out some of the events & campaigns Weekend in the Clayton Whites Hotel Wexford. that will take placeth in 2018.CROKE We PARKneed ABSEILS your help to 07 Hogan Stand, Croke Park Stadium, Dublin continue providing OCT care and7th October support 2017 to families affected by Motor Neurone Disease th DUBLIN CITY MARATHON 29 Dublin City - 29th October 2017 Adventure October We will be addingOCT morewww.sseairtricitydublinmarathon.ie to our calendar throughout this year so keep an eye on our th LIMERICK WOMEN’S MINI MARATHON• Saturday 13th October: Abseil off the roof of website
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