Spring 2009 MMDDII News Update Muscular Dystrophy Ireland, 71/72 North Brunswick Street, Dublin 7

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MDI Newsletter - Issue 41 = Spring 2009 MMDDII News Update Muscular Dystrophy Ireland, 71/72 North Brunswick Street, Dublin 7.

! em Tel: (01) 8721501 Fax: (01) 8724482 Email: [email protected] Web: www.mdi.ie h t rt po p h] u h it s it le e s e up K u o to Pictured at a Photo shoot to t C & 4 le K a 0 ap n 4 ow & o [U 0 n S n launch MDI’s 2009 Awareness - a e 04 io // s it 4 at p: u n r 0 s tt ou l n h ed U v il se : Campaign are Fair City stars t a e - at r r F 'N r po o s e ne p f rd O b li u a an m n Sandra Curran (Una) & Alan s te w l u o y A A n e e o d ot h V w & an v (Keith) T o n r / O’Neill (Keith) with 5 year old N ra rd o .ie V ur o 7 e T C w 0 in e a e 3 az Caoimhe Boers from Wexford h r th 53 g Caoimhe Boers from Wexford T d t r a an x e m S te b w t s um o u n vn J e .t th w w w

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MDI Newsletter - Issue 41 = Spring 2009 Research News MDI – Funded Researcher Makes the News Prof. Kay Ohlendieck, Head of Biology in NUI Maynooth, is one of MDI’s research grant recipi- ents, currently working on the project “Identification of Novel Biomarkers in Dystrophic Heart and Muscle Fibres Using Comparative Proteomics”. After meeting Prof. Steve Wilton from Austra- lia, who developed the exon skipping approach for Duchenne muscular dystrophy, they began col- laborating, and in January, Prof. Ohlendieck’s work was featured in the Irish Times and the Morn- ing Ireland radio show. Prof. Ohlendieck’s work strengthens the view that exon skipping has the potential to be a therapy for people with Duchenne muscular dystrophy. Prof Kay Ohlendieck Photograph: Frank Miller

Article from the Irish Times - Fletcher from the centre for neuro- form, Ohlendieck says. The Thursday, January 22, 2009 muscular and neurological disor- probes go to predefined locations ders at the University of Western along the RNA chain and elimi- Fresh hope on Australia. It builds on initial work nate specific “exons”, the building done by Wilton, who developed a blocks of the protein which are wasting disease gene therapy to reverse the central assembled using the RNA instruc-

A new approach to the treatment cause of the disease. The disease tions. “Because it skips over the of muscular dystrophy offers hope causes muscle weakness and defective exon it eliminates that to sufferers for a reversal of the eventual cell death when a key but allows the rest of the protein disease’s devastating effects, muscle protein, the dystrophin to be made,” he says. The resul- protein, is not working properly tant protein is foreshortened but it writes Dick Ahlstrom. due to mutation. is able to carry out at least some of its functions. In effect it per- RESEARCHERS AT NUI Maynooth have helped to confirm The most common and unfortu- forms as it does in the less severe the effectiveness of a promising nately life-threatening form is Becker’s form of the disease. “It new treatment for muscular dys- Duchenne Muscular Dystrophy, transforms a really severe muscu- trophy. They showed that the ex- explains Ohlendieck, head of NUI lar dystrophy to a manageable perimental gene therapy actually Maynooth’s department of biol- form,” he says. reverses some of the secondary ogy, and a Science Foundation damage caused by the life- Ireland principal investigator. It The unanswered question however threatening disease. typically sees the child forced to was whether this change also al- use a wheelchair by the age of 10 tered the way that other muscle The findings, just published in the or 12 and these patients seldom proteins performed. There are on-line version of the journal Pro- live beyond their mid-20s. A re- many secondary effects if the dys- teomics, are particularly important lated but much less dangerous trophin protein does not work. for Ireland. form is Becker’s Muscular Dys- trophy. Here the dystrophin pro- Ohlendieck met Wilton at a con- The progressive muscle wasting tein is shortened but is partly ference and they agreed to col- disorder is our most common gen- functional and the person usually laborate in important follow-up der-specific inherited disease. It survives into old age, he says. research. “What we have done is affects about one in 3,500 boys Wilton’s therapy involves using gone to the next step and looked at here and depending on the type, is “anti-sense probes” to silence how all the secondary muscle pro- almost always fatal, shortening small parts of the dystrophin proteins are affected by the treatment. life expectancy to about 20 years. tein, the elements that render the We did it using proteomics, look- protein wholly inoperable. It does ing at thousands of muscle pro- The research was a collaboration this by intervening in the stage teins.” involving Prof Kay Ohlendieck just before formation of the pro- and Dr Philip Doran at Maynooth tein when the code for producing An analysis using cultured muscle and Prof Steve Wilton and Dr Sue it is still in its “messenger RNA” tissue showed that once the par-

Page 2 MDI Newsletter - Issue 41 = Spring 2009 tially functional dystrophin was available the secondary downstream changes were reversed. “It is not fully functional but it is IInntteerrnnaattiioonnaall RRaarree good enough to reverse all the secondary abnormalities,” he says. DDiisseeaassee DDaayy This gives additional momentum to the use of the approach to treat the disease in hu- International Rare Disease Day took place on Saturday 28th February mans. Clinical trials are already under way 2009, and as all forms of muscular dystrophy are rare, MDI took part in the US and UK with results expected by in some events during the week leading up to the day itself to mark 2010, he says. Their work, funded by Mus- this occasion. To launch the week, MDI member Josh Dillon from cular Dystrophy Ireland, the Health Re- Dublin, attended a photoshoot with Alison Hyland who has Epider- search Board and Science Foundation Ire- molysis Bullosa (EB) and Joan Brosnan Walsh, who played Mags in land, provides important additional bio- Fair City and has been diagnosed with motor neurone disease. Thanks chemical proof that the exon skipping ther- Josh, the photos were great! (see bottom left). apy is good enough to reverse pathological changes in related downstream proteins. Three organisations, the Genetic and Rare Disorders Organisation (GRDO), the Irish Platform for Patient Organisations, Science and Ohlendieck views the work as “very en- Industry (IPPOSI) and the Medical Research Charities Group couraging”. “We now know that this ap- (MRCG) joined together to hold a conference on Wednesday 25th proach is the right one and most likely to February, “Focus on Rare Diseases in Ireland: What is the National achieve results for sufferers. It offers a real Plan?”. This meeting gave an insight into the difficulties faced by hope for a reversal of the devastating ef- people with rare conditions in Ireland, regarding information, diagno- fects of muscular dystrophy.” sis and treatment, and stressed the need for a national plan to be developed to address these difficulties. An exon skipping clinical trial is cur- On Rare Disease Day itself, Saturday 28th February, GRDO held a rently in progress in the UK. This trial is successful family day in the Mansion House in Dublin. The Lord currently testing systemic / intravenous Mayor of Dublin, Councillor Eibhlin Byrne hosted the event, while delivery of the “molecular patch”. For Senator Deirdre de Burca launched “The Voice of 12,000 Patients”, a more information, please visit the new new publication from EURORDIS, the European Rare Disorders Or- M D E X C o n s o r t i u m w e b s i t e : ganisation. This book presents the findings from surveys on the ex- www.mdex.org.uk. perience and expectations of 12,000 people across Europe with a se- lection of rare conditions, including Duchenne muscular dystrophy, Joan Brosnan Walsh, who regarding access to diagnosis and health services. played Mags in Fair City with Josh Dillon and Alison Hyland Rare Disease Day is going from strength to strength, so keep watch at a photoshoot to launch Rare for events next year on 28th February 2010. Disease Week activities.

Hubert McCormack, Karen Pickering and Judy Windle at the Information Day in the Mansion House, Dublin.

Page 3 MDI Newsletter - Issue 41 = Spring 2009 Disability Factsheets The Citizens Information Board (CIB) publishes a wide range of factsheets to ensure that the public has access to accurate, up to date and comprehensive information on rights and entitlements. Due to ongoing requests etc from members regarding information on disability issues and for members who do not have internet access, MDI has decided to include a CIB factsheet on various disability issues in our next few newsletters. This factsheet provides information on Education, Training and Employment. To view a full list of factsheets online visit: http://citizensinformationboard.ie/publications/

DISABILITY FACTSHEET 3

TTrraannssppoorrtt

you are availing of the Motorised Transport Grant. Apply to There is a range of entitlements in the area your Local Health Office. of travel and transportation for people with disabilities. Motorised Transport Grant This is a means-tested Health Service Executive grant (€4,917.20 maximum) paid to those aged 17 – 65 with a se- Free Travel Pass vere disability, towards the purchase/adaptation of a car which Free travel on public transport is available to those aged 66 or is essential to obtain/retain employment. Self-employed peo- over and to certain groups of people under age 66, who are ple may also be eligible. You must be physically and mentally getting specific disability payments – Disability Allowance, capable of driving and must hold a full driving licence. In Blind Pension, Carer’s Allowance and Invalidity Pension. certain circumstances someone else may be approved to drive People receiving Incapacity Supplement (formerly Unemploy- for the person with the disability where he/she is not physi- ability Supplement) for at least a year are also eligible. Free cally or medically capable of driving. The grant may also be travel is available on road, rail and DART services operated paid to those who are not in employment but are living in a by Bus Átha Cliath, Bus Éireann, Iarnród Éireann, LUAS very isolated area. If you avail of the grant you will not be services, the Aran Islands ferry service and on certain private eligible for Mobility Allowance for three years from the date services which have opted into the scheme. You can also use of the grant. Apply to your Local Health Office. It is intended your Free Travel Pass on any of the 34 schemes under the to deliver the above means-tested Health Service Executive Rural Transport Initiative. Peak-time access restrictions which payments at Social Welfare Local Offices in the future. applied on all Dublin Bus services and on Bus Éireann city services in Cork and Limerick are no longer effective. Disabled Drivers and Passengers Tax Relief Companion Travel Pass Drivers or passengers with physical disabilities (in receipt of a Certain people, medically assessed as being unfit to travel Primary Medical Certificate from the Health Service Execu- alone, are eligible to have someone aged 16 or over accom- tive) who use a specially adapted motor vehicle are entitled to pany them free of charge. Application forms (FT1) are avail- claim exemption from Vehicle Registration Tax and Value able from your Social Welfare Office and from the Free Added Tax on their vehicles, repayment of duty on fuel and Schemes Section of the Department of Social and Family Af- exemption from annual road tax. Application forms (DD1) are fairs. available from the Disabled Drivers section, Revenue Com- missioners. Mobility Allowance This is a means-tested Health Service Executive payment for Adaptations and Driving those aged 16 – 65 with a severe disability who are unable to The Irish Wheelchair Association and the Disabled Drivers walk and who would benefit from a change of surroundings. Association of Ireland provide advice on suitable car adapta- There are two rates of payment – €190 and €95 per month. tions to meet individual needs. They run driving schools for The higher rate is only paid to people who do not claim the people with disabilities and can provide information and ad- Disabled Drivers and Passengers Tax Relief. Mobility Allow- vice on all aspects of motoring. ance is not paid for three years from the date of the grant if Page 4

MDI Newsletter - Issue 41 = Spring 2009

Disabled Person’s Parking Card Available to drivers or passengers with severe disabilities which affect their mobility (aged 5 or over), for use in any car Contacts & Further in which they travel. It costs €25 (€50 to replace a lost card). Card holders can park in disabled parking spaces. Apply in Information writing for an application form to the Disabled Drivers Asso- ciation of Ireland or the Irish Wheelchair Association stating Disabled Drivers Section your disability and how it affects your mobility (enclose a Central Repayments Office, Revenue Commissioners, stamped addressed envelope). Coolshannagh, Co. Monaghan. Tel: (047) 38010, Lo-Call 1890 606 061 Toll Free Concessionary Travel Card Website: www.revenue.ie Disabled drivers and disabled passengers with specially adapted vehicles in Ireland are exempt from toll charges on national roads throughout Ireland. A Concessionary Travel Disabled Drivers Association of Ireland Card must be produced when going through these tolls. Ballindine, Co. Mayo. To apply for this card contact: Concessionary Travel Section, Tel: (094) 936 4054/4266 East Link Toll Bridge Ltd,, Toll Plaza, York Road, Ringsend, Website: www.iol.ie/~ability Dublin 4

The Disabled Person's Parking Card and the Concessionary Irish Wheelchair Association, Travel Card are not interchangeable. In other words, you must National Mobility Centre, Ballinagappa Road, have a Concessionary Travel Card to be exempt from paying a Clane, Co. Kildare. toll. Tel: (045) 893 094 Website: www.iwa.ie

Trains Trains Iarnród Éireann produces a guide for rail travellers, including East Link Toll Bridge Ltd, DART users, entitled Guide for Mobility Impaired Passen- Concessionary Travel Section gers. It is available free of charge in all stations. It offers ad- Toll Plaza vice and also provides information on the facilities available York Road at each station. Ringsend Dublin 4 Tel: (01) 6682888 The Dublin Bus Travel Assistance Scheme This scheme offers practical advice on planning and making a journey using public transport on Dublin Bus, Dart and Luas Free Schemes (Free Travel) services. Pension Services Office, College Road, Sligo. Tel: (01) 704 3000 or (071) 914 8371 “Vantastic” Lo-Call 1890 500 000 Vantastic provides a “Dial-a-Ride”, transport service for peo- Website: www.welfare.ie ple with disabilities in the greater Dublin area. To find out what service is available outside Dublin contact your local Dublin Bus Travel Assistance Scheme Centre for Independent Living. 59 Upper O’Connell Street, Dublin 1 For the greater Dublin area contact: Tel: (01) 703 3204 Vantastic, Unit 2a, Howth Junction Business Park, Kilbarrack, e-mail: [email protected] Dublin 5. Tel: 1800 242703 Wheelchair Accessible Van For Sale

Renault Traffic. 2003, 1.9 Diesel, Manual, blue, 36000 miles, 1 owner , 5 doors

Tel: 086 1237192 / 085 1147455 Email: [email protected]

ABS, Adjustable Steering Wheel, Alarm, CD Player, Driver Airbag, Immobiliser, Multiple Airbags, Rear Head Rests, Re- mote Central Locking. Wheelchair accessible Vehicle, Rear loader, seats one wheelchair with 2 passengers in the back. 2 passengers up front. Additional telescopic ramps inclusive. To view more pictures log on to Auto Trader Ireland VRT is still claimable upon this vehicle for buyer. (www.autotrader.ie) under – Renault Traffic.

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MDI Newsletter - Issue 41 = Spring 2009

MMDDII Transport - S- -e -r -v -i -c -e - - Hello everybody, Western Region The Southern Region (Cork and Kerry). The Western Region (Galway, Mayo Two vehicles are provided to service My name is Darren Lyons. I am the and Roscommon) is also covered by a this area. The first is a Nissan Interstar MDI Transport Fleet Co-ordinator. I high roof Nissan Primestar with the with a capacity to carry four ambulant joined MDI in May 2008. I would like same specifications as the Dublin Nis- passengers and up to three power to set out for you the transport service san Primestar. Similar to the Eastern wheelchair users. Jim O Donovan is the which MDI provides to our members in Region, the YRW for this area, Aisling driver and is available to help in any the Republic of Ireland. Dermody uses this bus for youth activi- way with members transport needs. Jim ties in the west. This bus can also be works closely with our YRW and driver MDI regards the safety and wellbeing of loaned to members when not in use by of the second bus in the area Mary Rose our passengers as paramount and with the YRW and again, subject to terms Howell. Together they organise trans- this in mind the management embarked and conditions. port for summer camps, outings, hospi- on a programme of upgrading the fleet tal or clinic appointments and events in 2006. The fleet now consists of 10 such as power soccer. Mary-Rose drives vehicles ranging in years from 2005 to North Eastern Region the high roof Nissan Primastar (which our latest addition delivered in January The North Eastern Region (Cavan, has the same passenger (cc) as the Dub- 2009. These vehicles are located around Louth, Meath and Monaghan) has one lin Nissan). Please contact Jim if you the country to provide as broad a service bus, another Nissan Primestar. Again need a loan of the Nissan Primestar or as possible. this bus has the same (cc) as the Dublin contact the Dublin office. The usual Nissan. It also has a high roof which terms and conditions will apply and Eastern Region gives extra head space for comfort and loan is subject to availability. affords the passenger more safety. Ci- The Eastern Region, (Dublin, Kildare aran McCashin is the YRW in this area and Wicklow) has two buses. The first and when he is not using this bus it can Upkeep & Maintenance is a Renault Master; it has a carrying be loaned to members and again subject With regards to the upkeep and mainte- capacity (cc) of up to three power to terms and conditions. nance of the fleet, all of the MDI vehi- wheelchair users and four ambulant cles are maintained to the highest stan- passengers plus the driver. This bus is dard. We have systems in place to en- used to transport members who request The Midlands sure the fleet is road taxed and compre- it, to and from hospitals, clinics, train Sinead Glennon is the YRW for the hensively insured. The Department of stations etc. The second bus in this area Midlands Region (Laois, Longford, Environment Certificate of Road Wor- is a high roof Nissan Primestar. It has a Offaly and Westmeath), which also has thiness test is carried out once a year on (cc) of three ambulant passengers or a Nissan Primestar high roof. Again, every vehicle. There is also a wheel- two power wheelchair users and one this bus is driven by the YRW for youth chair lift service scheduled for each ambulant passenger. Claire McGonigle, activities, and as with all of the fleet, it vehicle in compliance with the lift the Youth/Respite Worker (YRW) for is regularly in use so it is advisable to manufacturers recommendations. The the Eastern Region uses this bus for book a loan or transport request as early fleet is checked every day by the drivers youth activities in this area. When as possible. This can be done by con- for defects, tyres etc and a log of these Claire is not using this bus it is available tacting our Dublin office on (01) checks is submitted to our head office to members for short term loan, subject 8721501. each week for verification; random in- to availability and the terms and condi- spections are also carried out to ensure tions set out on our web site. The Mid Western Region compliance. Staff also ensure that the The Mid Western Region: (Clare, Lim- buses are kept clean and hygienic and North West Region erick and North Tipperary) is again sup- therefore every journey should be a The North Western Region, (Donegal, plied with a Nissan Primestar high roof. safe, clean and pleasant one for both the Leitrim, and Sligo) is covered by a high It is operated in the same way as the driver and passengers. The equipment roof Nissan Primestar. This bus has the North Western bus, in that it’s not used for wheelchair clamping and pas- same (cc) as the Dublin Nissan and is driven by an MDI staff member but senger safety restraint is of the highest located in the Letterkenny area of Done- rather is there for members to avail of quality and is inspected as part of the gal. This bus is not driven by an MDI for short term loan or can be used by drivers daily checks. staff member but is also available to organisations that meet with MDI’s members for short term loan, subject to criteria. Again you should contact the All MDI staff who are involved with availability and the terms and condi- main office in Dublin to place a booking providing transport for our members are tions. for this bus. trained and certified to the highest standard. They undergo intensive training The Southern Region Page 6

MDI Newsletter - Issue 41 = Spring 2009 in the Minibus Driver Awareness Scheme or MiDAS . This are constantly reviewing our transport to see how we can course covers a wide range of topics related to the safe opera- improve our service and availability to as many members as tion of mini buses, including safe boarding and alighting us- possible, whilst ensuring value for money and the long term ing a wheelchair lift, wheelchair clamping and passenger future of the service. safety restraint, breakdown and emergency procedures and defensive driving to name but a Enquires few. There is a refresher course For transport enquires in the Cork every two years thereafter as the and Kerry area please contact Jim MiDAS cert is valid only for this O’Donovan on: 086 8207872 period. This allows for ongoing For all other areas, contact our driver training and any new proce- Dublin office on free phone 1800 dures in best practice can then be 245300 or (01) 8721501. You can relayed to the driver and therefore also contact Darren Lyons, MDI keep the training relevant and up Fleet Co-ordinator at 086 to date. 3899262.

Cost All of these services and vehicles have a running cost and we at MDI know that without the sup- Pictured here is MDI port of our members and their Driver / Fleet Co-ordinator families and friends that we would Darren Lyons (right) being presented with the runner struggle to provide them. We up plaque by Gerard would like to take this opportunity O’Hanlon from Stredia, to thank all those people who sponsor of the MiDAS work really hard to fundraise and Driver Competition / Awards in December 2008. donate their time and money to Congratulations on a great MDI. We want to assure you that achievement Darren, from the fleet is run as efficiently and is all at MDI. as cost effective as possible. We Standards of Care Spinal for Neuromuscular Muscular Conditions Atrophy

TREAT-NMD is working with leading specialists world- wide to develop international standards of care for people Registry with neuromuscular conditions. Receiving the best care can TREAT-NMD, in partnership with the vastly improve a person’s quality of life and outcome. How- Jennifer Trust for Spinal Muscular Atro- ever, due to the relative rarity of individual neuromuscular phy in the UK, has developed a registry conditions, there has not been a consensus on how to pro- for people with SMA in the UK and Ire- vide the best care for people with these conditions, leading land. This registry is useful, not only for to differences in the standard between and within countries. researchers carrying out clinical trials, So far, standards of care have been developed for people but also to obtain prevalence data about with spinal muscular atrophy, and preliminary standards are the number of people with the condition available for Duchenne muscular dystrophy. These docu- and to try to achieve equal care for all ments will both be developed further and reviewed, and it is people with SMA. For more information hoped that standards will also be developed for more neuro- about the registry and how to register, muscular conditions. For more information, please see please see http://www.treat-nmd.eu/patients/patient-care/care-standards https://www.treat-nmd.org.uk/registry

Page 7 MDI Newsletter - Issue 41 = Spring 2009

Thank you to all who supported MDI’s NATIONAL AWARENESS DAY CAMPAIGN 2009 This year the Awareness campaign ran successfully due to the kind support received from MDI members and corporate support. MDI was Again, many thanks delighted and greatly appreciative to Londis, Debenhams and Eason’s who all took a substantial amount of chocolates to sell throughout to all our sponsors, their stores nationwide. including:

MDI would also like to thank everyone who kindly volunteered their time to help sell the chocolates in Debenhams; the selling ran for three days, from the 12th to 14th February.

MDI also sold chocolates on Grafton Street, Dublin on Valentines Day with assistance from the pupils from St Aidan’s Secondary School, White Hall, Dublin and also from other volunteers.

Thanks also to DPD Delivery Service who delivered chocolates nationwide.

We would also like to thank Arnotts Department Store on Henry Street, Dublin who also helped us with selling chocolates.

MDI is extremely appreciative and thankful to members, friends, businesses and volunteers who assisted with the sale of the chocolates throughout different outlets and towns nationwide.

MDI would also like to thank Alan O’Neill, Sandra Curran and Keith Duffy for their assistance with the promotion of the campaign. MDI received tremendous media coverage this year.

Result: Money is still being raised and collected and MDI will publish an update on the total amount of money raised in the next newsletter. ge): ils (next pa oto deta ates are: Ph ing chocol I and sell Sligo; ness of MD nlon from ote aware & Ann Co ool , ng to prom Goodwyn tional Sch Helpi ers Frank lunkett Na e! t: Volunte t Oliver P . Well don Top lef th Class, S lass mates ils from 6 olates to c rdinator, ight: Pup sold choc FSW Co-o Top R outh who et Goode, rd with rock, Co L : Margar om Wexfo Black Centre (aged 5) fr ne); he Boers uffy (Boyzo ber Caoim Keith D ew MDI mem and Matth tre (left); om Ardee, ; Cen Hutton fr om Duleek bers Nicky Sharkey fr MDI Mem Mooney; (right): ley & Joe Centre Amy Bram th MDI te Power, Collins wi I Staff Ka , & Betty oner. left: MD Pickering n Garry T Below ers Lauren Chairma t: Volunte Below righ

Page 8 MDI Newsletter - Issue 41 = Spring

Page 9 MDI Newsletter - Issue 41 = Spring 2009

Christmas Cheer! RReecceenntt FFuunnddrraaiissiinngg AAccttiivviittiieess Xmas Cheer for a charity so dear It didn’t appear the recession was near. We donned our Santa hats, And put on our gear And called to everyone, “Come here, come here”.

We want to spread some Xmas joy Have you a gift to wrap for a girl or a boy? People travelled for miles, we raised a few smiles, We rattled the box, they gave us lots.

We were amazed, at the amount we raised. Thanks to MDI Member Robert Vaughan, pictured above (seated) Great news to you and I. with his colleagues from the “Fresh Start” course in Coolock who The funds all went to MDI. raised €1,916 for MDI by gift wrapping Christmas presents in Omni Happy Days from Fresh Start, Park Shopping Centre, Dublin in December. They even wrote a MDI is a charity close to our hearts. short poem to mark the occasion (left). Congrats to all concerned and thanks for your support. Much appreciated folks.

Airsoft Shoot Out for MDI! The extreme sport Airsoft in Drogheda organised a charity fundraising day in conjunction with Simon Jameson from Dublin, held on Satur- day the 18th of January 2009 in the Airsoft arena in Drogheda. All proceeds from the day were donated to Muscular Dystrophy Ireland and the Lourdes Hospital Drogheda. Total funds raised €3000 MDI would like to sincerely thank Simon, John McDonagh proprietor of Drogheda Arena and all who attended on the day. The money raised will be used to fund the respite support services.

Airsoft is a combat sport similar to Paintball in which participants eliminate their opponents by hitting each other with small plastic balls launched from a compressed air gun.

Simon Jameson is a young adult member of Muscular Dystrophy Ire- land and an avid player of airsoft for a number of years. Simon is the only player in Ireland with a physical disability and was delighted to be a member with the first recognised Irish airsoft team in the republic appropriately named Na Taibhse or loosely translated as ‘the Ghosts’ Simon Jameson & Friends ready for action!

Thanks to the Hangman’s Jamboree! V olun MDI would like to teer thank Mark Noonan to as R s and the band The sist eq V with uir Hangman’s Jambo- ally selli ed (2n Sho ng ti ree for the concert d Ma ppin ckets Cen y) a g Ce in L they did in aid of tre, nd W ntre, iffe Muscular Dystrophy M New hit Du y DI H brid ewat blin Ireland, held in the arle ge ( er Sh y Da 22nd opp Sugar Club, Dublin See p vid Ma ing th ag son y) on the 26 February, the total amount raised was €450.00…many e 12 Na for for m tiona the thanks to all who supported the night. Thanks also to Garry Toner ore d l D etai raw for the contact! ls. .

Page 10 MDI Newsletter - Issue 41 = Spring 2009

RReecceenntt FFuunnddrraaiissiinngg AAccttiivviittiieess - continued... €50,000 Raised for Research

Cold grey frosty Front row left to right - John Battles, Brian Murray, days are not any- Darren Quinn, Bred McNamara, Tom Moloney. one’s favourite time Back row left to right Philip Mudge, Marcella of the year, and O'Neill, Greg Scannlon with so much bad news around it’s becoming difficult to feel upbeat. However some- times it’s the hard times that bring out the very best in people as was seen in the University of Limerick Arena on January 31st when dozens of swimmers from Limerick and Clare came together to break a few records and make more than a few euro for Mus- cular Dystrophy Ireland. Following could push themselves, and whose were delighted with the success of on from the huge success of the Eng- distance or time they could beat. the event and hugely appreciated the lish Channel fundraiser swim by There were personal triumphs of all level of participation as well as the eight Channel Swimmers in Septem- kinds on the day including the swim public support for the fundraising ber 2008, they decided to go the ex- by Jason Slattery who has MD him- and the support of UL Arena who tra mile, or millionth metre and self and yet swam 200m to beat his provided the wonderful venue for show their support for this hugely granddad’s total of 150m! this unique sporting day. deserving charity by getting everyone they knew into the water from Members of Limerick Masters Club An incredibly positive start to 2009, dawn until dusk on the 31st and swam over 200,000 metres, but such and further proof, if such was rounding off the total raised for MDI was the support among the swim- needed that the sporting community to well over €50,000. ming community for this event that of Limerick, especially the swim- Lahinch Masters club swam at 7 pm ming community, never know how Completing a total distance of in their own pool in Co. Clare and to say never. 1,019,100 metres on the day swim- Connaught Swim Team also joined Mary Coll mers of all ages and all levels of in the spirit of the swim on the day. Limerick ability took to the pool in adjoining There were literally dozens of young MDI would like to sincerely thank, lanes in a festival atmosphere and swimmers from all the clubs in the Breda Mcnamara, Philip Mudge, John the 1,000,000th metre mark was fi- region in the water on the 31st, in Battles, Greg Scanlon, Darren and nally passed at 5:35pm by Finn addition to senior squads and mem- Thomas Quinn, Marcella O'Neill and Brady Halmschlag. It was a day bers of Limerick Triathlon Club, UL Tom Moloney, for all their hard work, filled with fun and excitement, and Waterpolo Club, Seal S.C, St Paul’s dedication, goodwill and kindness at true to form, no small level of com- S.C. Roxboro Sharks, Limerick spending so much time and energy on petition between the various swim- Swimming Club and High Perform- this fundraising initiative. It is really mers trying to see just how far they ance squad. Limerick Master’s appreciated.

Page 11 MDI Newsletter - Issue 41 = Spring 2009 Upcoming Fundraising Events Harley Davidson National Draw

The Ireland Bike Fest 2009 will take TTiicckkeettss oonnllyy €€55 -- OOnn SSaallee NNooww place from 5th - 7th June in Killarney, Co Kerry. This is a must date for your diary, AAvvaaiillaabbllee ffrroomm MMDDII ooffffiiccee oorr oonnlliinnee as it promises to be a great family event suitable for all ages and filled with plenty aatt wwwwww..mmddii..iiee of entertainment - and IT'S ALL FREE! As in 2008, the Gleneagles Hotel are kindly supporting MDI again this year by Tickets will also be on sale at the hosting a National Draw, with a first prize of a Harley Davidson Bike (a Sportster following venues: Iron 1883) which will be raffled at this event, and all proceeds going to Muscular Liffey Valley Shopping Centre. Lucan, Co Dublin Dystrophy Ireland. Tickets will be on sale nd at the event and also from Muscular Dys- Saturday the 2 May 2009 trophy Ireland. The Lucky Winner will be White-Water Shopping Centre, Newbridge, Co Kildare announced on Sunday 7th June 2009. nd rd 22 & 23 May 2009 MDI is now selling tick- Women’s World Show at the RDS, Ballsbridge, Dublin 4 (number collection point for Flora Mini Marathon participants) ets for this national Friday,, Saturday & Sunday the 29tth,, 30tth & 31sstt May 2009 draw, prizes for which Muscular Dystrophy Ireland will be providing information, selling chocolates and national draw tickets to win a Harley-Davidson Motorcycle, are: kindly supported by the Gleneagles Hotel.

First prize: Harley Davidson Motorcycle Sportser Iron 883

T Second prize: he TV Don Weekend for two in San Now Vo ’t f dra A te org The Brehon Hotel, Killarney Cur war for et t Ju ran ds F U o st t & A avo na Third prize: b ext lan urit & er 5 the O'N e S Ke Harley Davidson 330 wor eil oap ith 7 o d an l 04 Cou Leather Jacket r vo d n 04 ple t um [U e on be na Draw will take place during the Ireland line r - s & K th at en ei Bike Fest on Sunday the 7 June in the : ht sati th] tp:// on 0 Gleneagles Hotel. ww 404 w.tv to now the Page 12 m num agaz - ine. ie/ MDI Newsletter - Issue 41 = Spring 2009 Upcoming Fundraising Events

• Runners • Joggers • Walkers • Cyclists Wanted • Wheelers • Swimmers To run, walk, wheel or jog in: To swim in:

Flora Women’s Mini Marathon, Dublin Muckross Lake Bank Holiday Monday Swimathon, Killarney 1st June 2009 National Park, Co Kerry (see back page) Saturday 26th July 2009, starting at 12 noon

Cork City Marathon This is a 3 km Swimathon, starting at the Dunbeg Boatshed and swimming Bank Holiday Monday across to Dina’s Cottage. If you are st 1 June 2009 interested in taking part there is a €40 entry fee and sponsorship cards will If you are interested in taking part or know a friend or be provided to assist raising crucial family member who would like to participate in aid of funds for Muscular Dystrophy Ire- Muscular Dystrophy Ireland, please contact us. lands respite support services.

Dingle Marathon & Half To cycle in: Marathon Lough Derg One Day Saturday 12th September 2009 Charity Cycle This is the inaugural year for the Dingle Marathon and (through the beautiful Shannon hopes that it will become an annual event. The event will region) incorporate both a full marathon and a half marathon to 15th August 2009 facilitate all participants. MDI is seeking as much support again this year for the second sponsored charity cycle. If you know of anyone interested in cycling…friends, family If you would like to take part, know someone that or neighbours please encourage them would be interested or you would like further in- to take part and raise money for MDI. formation on any of these events contact Amy The cycle will bring you through the Bramley on (01) 872 1501 or email [email protected]. beautiful Shannon region and will be approximately 60 miles long. Refresh- Your support is much appreciated ment and food will be provided along the route. Page 13 MDI Newsletter - Issue 41 = Spring 2009

MDI Members Meeting with TDs and Senators

As you are aware, MDI held its first in- community services, e.g. physiother- formation day for TDs and Senators in apy, occupational therapy and per- April 2008, to facilitate members in sonal assistance - and to stress the meeting their local TDs to discuss the need for increases in funding and issues affecting them and to raise availability of these services awareness of muscular dystrophy and • To stress the importance of ongoing MDI. funding of research into muscular dystrophy. Due to the success of this day last year, MDI is hosting a similar day this MDI would like to invite members to year on Wednesday 6th May 2009 in attend on this day, to meet their TDs Buswells Hotel, Dublin, just across the and raise the above issues (as well as road from the Dáil, at 12pm. any other issues which affect you di- rectly) with the people who make the This event last year proved to be a decisions. great opportunity for members to meet their local TDs to discuss issues af- MDI would also like members to con- fecting them and to raise awareness of tact their local TDs and ask them to muscular dystrophy and MDI. attend the event. An invitation will be sent out to all TDs, but we need peo- Given the present economic downturn ple in their local areas to encourage and the nationwide cutbacks in fund- their government representatives to ing and services etc, MDI now needs attend. your help more than ever to ensure that we can continue to maintain the This is your opportunity current level of services which we provide. to make your voice heard.

The main issues which need to be ad- We would appreciate your dressed are: support in this matter. • To inform TDs about muscular dystrophy and to keep them updated on the role and services of MDI • To highlight the lack of access to

Page 14 MDI Newsletter - Issue 41 = Spring 2009

A date for your diary! MDI Equipment Loan Library MDI Annual Conference & AGM The 2009 Annual Conference & AGM of Muscular Dystrophy Ireland

will take place on MDI has a number of How to access the Saturday 23rd May pieces of equipment that Equipment Loans members can borrow on service in the a short or long term loan For more information, basis. These pieces of please contact your local Red Cow Moran Hotel, Naas equipment include Family Support Worker Road, Dublin. hoists, shower chairs, or contact Darren Ly- wheelchairs, slings, ons, in the Head office Speakers will include: ramps etc. Our equip- o n 0 1 87 2 1 50 1 , ment is stored in various freephone 1800 245300 Prof. Kay Ohlendieck, parts of the country and or email [email protected] NUI Maynooth and can be transported where required. There is Unused Equipment Dr. Deniz Yilmazer-Hanke, UCC If for any reason, mem- (MDI funded researchers). a limited amount of equipment available and bers have equipment on Natasha Spremo, MDI will try to accom- loan that is no longer Assisted Living Services, IWA modate members who required or is not being need a piece of equip- used, we would ask you to return it or contact More details will be posted out ment, but it will depend on availability. Darren at Head office on to members in due course. 086 8399262 who will arrange collection. Hilton Foundation Awards €11,000 to Muscular Dystrophy Ireland Muscular Dystrophy Ireland (MDI) was thrilled to receive funding of €11,000 from Hilton in the Community Founda- tion (HCF) following fundraising by team members at Hilton and Conrad hotels in Ireland. The grant will support the provision of MDI’s Youth Respite Service which in- Pictured at a cheque presentation of €11,000 from the Hilton Founda- cludes summer camps. tion are (l-r) Joe Mooney, Ephraim Purcell, Ciaran Purcell, Friedrich Schaefer (Area Manager Hilton), Donal Purcell & Amy Bramley

Page 15

MDI Newsletter - Issue 41 = Spring 2009 A Note from the CEO Flora Women’s Dear Members and Friends of MDI,

As I’m sure you all are aware, Ireland is Mini Marathon going through a recession at present and unfortunately MDI does not escape this. To date MDI’s funding has been cut by Be part of the 3% and may be cut even further throughout the year. Due to this reason all MDI staff have been requested to implement MDI Team efficiency cuts where practical for example travel, phone, etc. As you can imagine fundraising is of crucial importance but all Bank Holiday Monday the signs are at present, that this may be st curtailed due to the lack of the general 1 June 2009 public not having disposable income to Application forms are now available to register for donate to charities. this year’s Women’s Mini Marathon in the Eve- I would like to reassure members that I ning Herald each Wednesday and Saturday and all the members of staff in MDI will or you can register online at endeavour to keep all the support services www.womensminimarathon.ie that we have been providing but a few may Why not run for Muscular Dystrophy Ireland have to be slightly curtailed. I know its We will be meeting as usual in Café en Seine on doom and gloom at present but I feel if we We will be meeting as usual in Café en Seine on can all work and support one another we Dawson Street after the event for a drink. will get through these hard times together For further information, sponsorship cards and become a more united team into the and T-Shirts, contact future. Amy in the MDI office on (01) 8721501 or E-mail [email protected] I would like to encourage all members to attend our second lobby day on Wednes- day the 6th May when ‘MDI members meet the TDs’ in Buswells hotel, Dublin. I We need your support hope to see you all on this occasion but if you have any queries please do not hesitate to contact myself or any member of staff at MDI. United we stand, divided we fall. Me e et th Joe T. Mooney e TD Chief Executive Officer Inf s & Muscular Dystrophy Ireland orm Se atio nato n rs Company registered name: 6t Da s Muscular Dystrophy Society of Ireland Ltd. B th M y Company registered office: usw ay 71/72 North Brunswick Street, Dublin 7 ell 20 Country of registration: Ireland - 60460 s Ho 09 Directors: Garry Toner, Elaine McElligott, W otel Joe Jameson, Sammy Brill, Dan Curran, Florence Dougall, e n , D Kathy LeBrasse. ee ub d y lin To Contact Us: Phone: 01 8721501 Fax: 01 8724482 S ou ee p r s Email (general): [email protected] Website: www.mdi.ie age up Email (for newsletter): [email protected] Editor: Hubert McCormack 14 pp or t