MDIMDI NewsNews UpdateUpdate MDI Newsletter - Issue 72 - Spring 2018 Newsletter of Muscular Dystrophy Ireland Updates on research, information, fundraising, social activities and upcoming events.

MeetMeet thethe newnew CEOCEO ofof MDIMDI Ms.Ms. ElaineElaine McDonnellMcDonnell MoreMore detailsdetails inside.inside.

Muscular Dystrophy Ireland, 75 Lucan Road, Chapelizod, Dublin D20 DR77 Tel: (01) 6236414 Fax: (01) 6208663 Email: [email protected] Web: www.mdi.ie

Page 2 MDI News Update Issue 72 - Spring 2018 IntroducingIntroducing thethe newnew MDIMDI CEO,CEO, Ms.Ms. ElaineElaine McDonnellMcDonnell

s you are all aware, the last few years have been a difficult and sometimes an uncertain time for A MDI, with the initial and sudden passing of our CEO Joe T Mooney in September 2015 and then most recently with the resignation of Mr Richard Lodge from this post. In October 2017 Mr Tom Nolan was appointed as interim CEO until a new and suitable candidate was found.

In December 2017, the position of CEO was advertised and on this occasion, in the first instance applications were accept- ed from adult members of MDI, staff and registered volunteers. The closing date for receipt of applications was 12 th January 2018. Interviews were held shortly there- after and we are now pleased to announce that a new candidate has been identified. Ms Elaine McDonnell has been appointed as the new Interim Chief Executive Officer of MDI and commenced in her new role on 5th February 2018. and most recently Chairperson of MDI, a role which she now must vacate in order to take up Elaine is extremely well known amongst our the position as new CEO of MDI. membership. As a parent of a young adult with muscular dystrophy, she is very aware of Elaine also brings to MDI her many years of many of the chal lenges that living with experience as a secondary school teacher, as muscular dystrophy may bring. She was a she previously worked as a teacher with Laois founding member of the Midlands Branch of and Offaly Education and Training Board until MDI and is still an active member. Elaine and 2013. her family were among many energetic members from this region who over the years, We would like to congratulate Elaine on her helped to raise much needed funds and create new appointment and in the next issue of this essential awareness of the condition muscular newsletter we will feature an introductory article dystrophy, at both local and national level. in which she will formerly introduce herself to all our members and stakeholders and outline She has been involved with Muscular Dystro- her hopes and aspirations for the future of MDI. phy Ireland for nearly 20 years and throughout We wish her well in her new role. Hopefully, this time she has served on various committees Elaine’s appointment will mark the beginning of and sub-committees at both local and national new and exciting times for MDI. level. She has also served on the National Executive since 2007 fulfilling different roles Hubert McCormack including; National Treasurer, Vice -Chairperson Administrator / Editor

MDI News Update Page 3 Issue 72 - Spring 2018

MDIMDI continuecontinue toto advocateadvocate forfor AccessAccess toto NewNew TreatmentsTreatments

It is currently an exciting time for muscular dystrophy with the emergence of new treatments and a high level of innovation in an area of high unmet needs. But the availability of these therapies in Ireland brings challenges particularly with regard to approval and reimbursement. Over the past number of years, MDI has been campaigning and working with policy makers in an attempt to gain access to much needed new therapies.

MDI members, staff and fellow campaigners outside Leinster House advocating for access to new treatments and therapies.

Page 4 MDI News Update Issue 72 - Spring 2018 Translarna (Ataluren) MDI’s advocacy in this area has included presenting to the Joint Committee on Health in July 2017. In October 2017, members of MDI who are campaigning for access to Translarna spoke in Leinster House in a meeting organised by Senator Rose Conway Walsh. We were joined by Michelle Young, from Scotland, whose son Michael is receiving Translarna. MDI Member Anne Marie Harte also spoke about her fight to access this medication for her son.

In December, representatives from MDI met with the Minister for Health, Simon Harris to discuss the issue of access to Translarna. Following this meeting, we are hoping that a sensible agree- ment can be reached between the HSE and the manufacturer of the drug.

Spinraza (Nusinersen)

Following the NCPE’s recommendation not to reimburse at the submitted price, the company Bi- ogen have moved to price negotiations with the HSE. We will keep you updated on any further progress. NCPE Make recommendation on Nusinersen (Spinraza) for SMA

n the 19th December 2017, the Na- living with SMA and their families who could tional Centre for Pharmacoeconom- benefit from this treatment. However, it is im- ics (NCPE) issued their recommen- portant to note, that this recommendation only O dation following the Health Technol- forms part of reimbursement process. The ogy Assessment (HTA) of Nusinersen for the next stage in the process will involve further treatment of 5q Spinal Muscular Atrophy price negotiations between Biogen and the (SMA). The NCPE has not recommended for HSE Corporate Pharmaceutical Unit and sub- reimbursement of Nusinersen at the submit- sequently a final decision will be made by the ted price. HSE Drugs Group.

MDI understands that this decision will be very Any members who have questions about this disappointing and frustrating for our members recommendation can contact [email protected] Santhera Receives Negative CHMP Opinion on Appeal for Authorization of Raxone Santhera Pharmaceuticals announced on the 23 rd of January, that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) maintained its negative opinion on the Type II extension application for Raxone (idebenone) in Duchenne muscular dystrophy (DMD) following a re-examination procedure. The CHMP concluded that an approval for Raxone in DMD, applied as a Type II variation of the existing marketing authorization, cannot be granted at the present time based on the current existing evidence. Although the positive outcome of the Phase III DELOS trial was acknowledged, the CHMP has invited Santhera to present additional data to further link the observed treatment effects on respiratory function outcomes to patient benefit. Santhera have stated that they will continue working with regulatory authorities to bring this treatment op- tion to patients as quickly as possible.

MDI News Update Page 5 Issue 72 - Spring 2018 Meet the Researcher In our last Newsletter, we started a new “meet the researcher” section. This is a great way for our members to find out more about research that is funded by MDI. In this edition we will focus on the work of Professor Nadir Maraldi in the Rizzoli Ortho- paedic Institute in Bologna, Italy.

rofessor anocytes further and assess whether they could be Maraldi used as an alternative model to muscle cells. and his team are Using the melanocyte cell models in a dish he will investigatingP also test for potential new therapies. Drugs that in- whether a type of hibit the faulty mitochondria will be tested to see if they can stop the cell-death pathway. skin cell, called melanocytes, Why is this research important? could be used as Good models of a condition are needed to assess a cellular model to the effect of new treatments and to better under- study collagen VI- stand the underlying biology that leads to muscle related myopa- weakness. This project will determine whether mela- thies. This re- nocytes are a good cellular model to test potential search could pro- therapies for collagen VI-related myopathies. If so, vide a useful tool clinicians could have a valuable tool to measure the for testing poten- effectiveness of potential therapies. It is also im- tial treatments. portant because melanocytes can be obtained from Professor Nadir Maraldi a skin biopsy, which is a less invasive procedure than a muscle biopsy. What are the aims of the project? In collagen VI-related myopathies (For example How will the outcomes of this research ben- Ullrich’s and Bethlem Myopathy) there are changes efit people with collagen VI-related myopa- to the structure and function of mitochondria (the thies? parts of the cell that generate energy) in muscle This research could provide a better cell model for cells. These changes trigger a biological pathway testing effective inhibitors of the mitochondrial cell that leads to muscle cell death. To test potential death pathway, which could aid the identification of therapies for their ability to correct the mitochondrial a potential therapy. It would also reduce the need defects in collagen VI-related myopathies, muscle for muscle biopsies to test the new therapies. cells are collected via a muscle biopsy. However, this is an invasive procedure and the cells can be How might this research impact on other difficult to grow in the lab. Therefore better models neuromuscular conditions? are needed. The faulty mitochondrial function that this project is investigating contributes to muscle cell death in oth- Professor Maraldi has recently shown that in people er neuromuscular conditions. The development of with collagen VI-related myopathies, some changes therapies that inhibit faulty mitochondrial function seen in the mitochondria of muscle cells are also might therefore benefit people with other muscle seen in melanocytes (skin cells that produce pig- conditions. ment). In this project he will characterise these mel-

This project is supported by the Collagen VI Alliance, which is made up of Muscular Dystrophy UK, Cure CMD (USA), Muscular Dystrophy Ireland, AFM Telethon (France), Swiss Foundation for Research on Muscle Disease.

Page 6 MDI News Update Issue 72 - Spring 2018 MDIMDI MembersMembers meetmeet thethe PoliticiansPoliticians

On Thursday the 28 th of September, MDI held our Politician’s Lobby day. This event al- lowed our members to meet with their local TD’s in an accessible environment and to discuss issues that are important to them. This is a popular event with 30 politicians attending or sending their advisors. A briefing document was distributed to all in attendance and MDI spoke about important issues such as personal assistant and emergency respite, access to novel and newly approved treatments, the provision of accessible housing for people with disabilities and the preservation of MDI’s funding. TDs and Senators were asked to incorporate these important commitments in their manifesto for the next programme for government. MDI would like to thank all of our members, staff and the politicians who came on the day. The following Politicians attended: • Minister Finian McGrath • TD • Thomas Pringle TD • Minister Joe McHugh • Thomas Byrne TD • Kevin O'Keeffe TD • Minister • TD • Senator • Minister Regina Doherty • John Curran TD • Senator John Dolan • Minister • Michael Fitzmaurice TD • Senator Ronan Mullen • Minister Mary Mitchell O’Connor • Mattie McGrath TD • Senator Rose Conway-Walsh • James Browne TD • Frank O'Rourke TD • Cllr Seán Smith • Eamon ScanlonTD • Maureen O'Sullivan TD • Cllr Damien O'Reilly • Dr Michael Harty TD • TD • Jan O'Sullivan TD • Jack Chambers TD • Margaret Murphy O'Mahony TD • Niamh Smyth TD

Minister Finian McGrath TD, pictured with Richard Lodge and Hubert McCormack at the MDI TD Day last September.

MDI News Update Page 7 Issue 72 - Spring 2018 MoreMore PhotosPhotos fromfrom thethe MDIMDI TDTD DayDay

Page 8 MDI News Update Issue 72 - Spring 2018 MDI Respite Holidays 2018

Below is a list of the MDI respite holidays which will take place in 2018 All holidays will be held in Kilcuan Lodge, Clarenbridge, Co. Galway Camps for Adults Photos from Camps 2017 Holiday 1 - (26 + Adults) Mon 16 th to Sat 21 st April 2018 Places Available 12 Holiday 2 - (Over 50 year olds) Mon 21 st to Sat 26 th May 2018 Places Available 12 Holiday 3 - (18 – 25 year olds) Mon 23 rd to Sat 28 th July 2018 Places Available 10 Holiday 4 - (18 – 25 year olds) Mon 27 th August to Sat 1 st Sept 2018 Places Available 10

Camps for Children Holiday 1 - (15 – 17 year olds) Mon 25 th to Sat 30 th June 2018 Places Available 12 Holiday 2 - (11 – 15 year olds) Mon 9 th to Sat 14 th July 2018 Places available: 12

Activities - vary from camp to camp (depending on the age group). These include: Workshops, Shopping, Cinema, Table Quizzes, Arts & Crafts, Play Station Tourna- ments, Power Soccer, Board Games, Movie Nights, Swimming, Salt Hill Promenade & Aquarium, Fishing, Comedy Nights, Picnics, etc.

Venue for camps:

Kilcuan Lodge Clarenbridge Co. Galway

For more details visit: www.ihcpt.com

MDI News Update Page 9 Issue 72 - Spring 2018 Muscular Dystrophy Ireland RespiteRespite HolidaysHolidays // CampsCamps 20182018 Personal Assistants Wanted We are currently looking for Personal Assistants to work with our members, both in their homes and on MDI Camps (which are residential and take place in Galway) . We are looking for: • Male and Female PA’s (minimum age 18 years) • Enthusiasm, caring nature and sense of fun is a must • Experience not essential, full training provided • Accommodation, food and activities will be provided.

Dates for all camps in 2018 are listed on the Photos taken at previous MDI Holidays previous page. Activities vary from camp to camp, depends on age category.

Benefits include • Experience of working with members with neuromuscular conditions • Training Provided: e.g. Child First Policies, First Aid, Manual Handling, Disability Awareness and Personal Care Skills.

Full Job Description and more details are available from the MDI website (see details below).

MDI conducts a strict screening process on all potential applicants.

For more information visit: www.mdi.ie/personal-assistant.html Phone: (01) 6236414 or email: [email protected]

Page 10 MDI News Update Issue 72 - Spring 2018 Fundraising News and Updates Ballincollig Writing Group Launch of Second Book “Further Tales from the White Horse” with all proceeds going to Muscular Dystrophy Ireland

allincollig Writing Group ‘Litwrits’ have released their second book called B ‘Further Tales from the White Horse’ and proceeds from the sale will go to Muscular Dys- trophy Ireland.

The book is a follow on from their first publica- tion of combined writing called ‘Tales from the White Horse’. The new book consists of short stories, fictions, fantasy, humour, poetry and much more. The ‘Litwrits’ are a local writing group of 9 people who have come together over the years and have a common interest and pas- sion for writing and literature. The group meet regularly in the White Horse Bar in Ballincollig and found it very appropriate to name the book after it.

Diana Cassidy, member of Litwrits, said ‘we are seeking as much support as possible for the

Mark Pates and his wife Diana Cassidy (member of Litwrtis Writing Group) presenting Only the book to Owen Collumb from MDI €10.00 new book which is a group collaboration of our own work. We chose Muscular Dystrophy Ireland On sale as it is a charity that provides vital support and respite to many families living in Cork”. The group at MDI have sourced sponsorship from local businesses to cover the costs of print, production and to en- sure all proceeds from the sale will be donated to Muscular Dystrophy Irelands respite support ser- vices.

‘Further Tales from the White Horse’ is €10 and is available to buy from Maurice Healy's Post Office in Ballincollig and from Muscular Dystrophy Ire- land Head Office.

For more information or enquiries please check out the Ballincollig Litwrits Facebook page, email [email protected] or contact Amy Bramley, PR & Fundraising Coordinator, MDI, email: [email protected].

MDI News Update Page 11 Issue 72 - Spring 2018

In recent months, we at MDI have had a number of enquires from our members about how to claim a VAT refund on the purchase of aids and appliances for people with disabilities. Given the recent demand for information on this topic, we have once again included details of same below. VAT refunds on aids and appliances used by people with disabilities Introduction • Commode chairs • If you live in Ireland and you have a disability, Lifting seats and specified chairs • you may get a refund of Value-Added Tax Braille books • (VAT) on certain special aids and appliances Hoists and lifts, including stair lifts • that you need. In some cases people who pay Communication aids for aids and appliances that are for the exclusive use of a person with a disability can also claim More information on how to reclaim VAT on aids the VAT refund. People with both physical and and appliances for people with disabilities can mental disabilities can avail of these refunds. be found on www.revenue.ie. This scheme of VAT refunds on aids and appli- ances can also apply to adaptation and installa- How to apply tion work being carried out to make a home To apply for a VAT refund on aids and applianc- more suitable for an older person or for a person es, fill in claim form VAT 61A (pdf) which can be with a disability. downloaded from this address: https://www.revenue.ie/en/vat/documents/ Rules form-vat61a.pdf Under the Value-Added Tax (Refund of Tax) (No. 15) Order 1981, you can claim a VAT re- You must attach supporting documentation with fund on aids and appliances that help you carry your claim - for example, original invoices for all out daily activities at home or at work. You may the goods in the claim or, in the case of imported need to produce medical evidence of your disa- goods, receipts for VAT paid at importation. In bility. the case of a hire purchase agreement, you will need to supply a copy of the agreement and the To claim a VAT refund you must: invoice. • Live in Ireland • Have a disability Where to apply • Need the aid or appliance to help with daily For more information or to claim a refund on an activities aid or appliance contact:

The aid or appliance must be owned by the per- Central Repayments Office son with the disability and be for their exclusive Office of the Revenue Commissioners use. Examples of eligible aids and appliances M: TEK II Building include: Armagh Road • Domestic aids, for example, eating and drink- Monaghan ing aids Tel: 047 62 100 • Walk-in baths Homepage: http://www.revenue.ie Win a Harley Davidson - Tickets €5.00 Once again, MDI will be selling tickets this year for you chance to win a Harley Davidson. Tickets will be available soon from MDI. If you would like to help us sell tickets please contact Amy on (01) 6236414 or email [email protected] Draw Takes Place Sunday 3rd June 2018 with all proceeds to MDI

MDI News Update Page 12 Issue 72 - Spring 2018 EquipmentEquipment DonationDonation toto PolandPoland Many of our readers may remember that in 2016 we at Muscular Dystrophy Ireland donated some of our overflow of electric wheelchairs, shower chairs and medical equipment to a charity based in Bos- nia and Herzegovina. Well, in late 2017 MDI was approached this time by the Polish Scouting Organ- isation in Ireland and we were asked if we would have some additional overflow equipment such as electric wheelchairs, which we could donate to them. If so, they who would have them repaired and transported to Poland. MDI were happy to be in a position to provide four electric wheelchairs, two shower chairs and some walking aids to the Polish Scouting Organisation. The Scouts in Ire- land collected the equipment from MDI and started making repairs to the broken and damaged equip- ment, with the supervision of their Scout Leaders. After all the repairs were completed they transport- ed the aids and appliances to the Zwiazek

Otwock, 5th January 2018 r.

Owen Collumb, Muscular Dystrophy Ireland, 75 Lucan Road, Chapelizod, Dublin D20DR7, Harcerstwa Polskiego institute in Otwock. Irlandia

A LETTER OF THANKS They recently acknowledged MDI’s contri-

Honorable Owen, bution by issuing us with a Certificate of Appreciation and sending us a letter of In November we received a wonderful donation – electric wheelchairs, delivered to Otwock by Polish scouts from Ireland – 87th Dublin Polish Scouts Group. thanks. In their letter they thanked MDI members for their contribution and stated We would like to thank you and members of Muscular Dystrophy Ireland for this extraordinary gift. that every member who received a wheel- chair or a piece of equipment was ex- Thanks to Your personal contribution, great hearts of MDI members and scouts, who under leadership of scout’s leader Arkadiusz Lenkiewicz prepared and delivered tremely grateful. to Poland wheelchairs, we can help people with disabilities live a better life.

Wheelchairs sent to us by You are really needed in Poland, they will make every Once again, MDI is happy to be able to day easier for their users. assist an organisation which provides simi-

I am really grateful for Your help and I would like to ask You for handing on words lar supports and services to its community of thanks for MDI members not only from me, but also from every single person who of members but in much more challenging received a wheelchair. circumstances. We wish the Zwiazek With scout’s greeting, Harcerstwa Polskiego Institute in Otwock the very best in the work that they do and we look forward to hearing of positive de- velopments in the future.

Owen Collumb Muscular Dystrophy Ireland

MDI News Update Page 13 Issue 72 - Spring 2018 New Geberit automatic toilet and changing table installed at MDI! Since the opening of our new offices and Na- installed by Sync Living formerly Disability tional Resource Centre here in Chapelizod in Needs). 2011, one of the primary aims of our premises Sync Living is a leading mobility and home was to provide a comprehensively equipped adaption solution company to assist people aids and appliance facility, where members with disabilities in leading a more comfortable and people with disabilities can pop in and try life at home and outside. The company is bus- out and test different types of equipment and tling with a versatile range of state of the art accessories designed to assist and make life Bathroom Adaptions, Home and Mobility Solu- easier for individuals and/or carers. Different tions to encourage independent living. For types of equipment such as hi-lo desks, hoists, more home adaption inspiration visit syncliv- shower chairs, shower trolleys, baths, toilets ing.co.uk. etc. are therefore now installed throughout the MDI office and “Home from Home” Apartment Members and people with disabilities are wel- and we are regularly upgrading and always try come to pop in to MDI anytime to view, try out to acquire new aids and appliances that may or enquire about these two new pieces of become available and have same installed for equipment, and indeed any or all of the other both use and demonstration purposes for peo- aids and appliances that are installed and dis- ple with disabilities. played throughout our premises. Please phone in advance to make an appointment if Two such new pieces of equipment which you wish to do so. were recently installed in the downstairs bath- rooms at MDI was a changing table and a new For further information contact Owen Collumb, Geberit Automatic Toilet (kindly donated and Facilities Coordinator, MDI on (01) 6236414 or email [email protected].

Simon Thomas from “Geberit” (left) pictured with MDI staff after in- stalling and demonstrating the new Geberit Automatic Toilet in MDI.

Page 14 MDI News Update Issue 72 - Spring 2018

New Wheelchair Accessible Bathroom at IKEA, Dublin

fter a trip to IKEA recently, I felt I had to sliding doors to the entrance of this stand alone share the following information with all unisex private bathroom, a ceiling track hoist, a hi- of our readers about the wheelchair lo electric changing table, a height adjustable elec- A accessible facilities available within their tric hand basin and a portable privacy screen, all of Dublin store, particularly in relation to their wheel- which is fitted to the highest of standards within chair accessible bathroom, which from my experi- this clean and hygienic environment. ence, is the most spacious and fully equipped ac- cessible bathroom that I have ever seen in a com- Congratulations to IKEA on pulling out all the stops mercial / public setting. Located near the restau- in relation to promoting “ access all areas” for all rant on the first floor, this facility has: automatic disabilities. We hope others will learn from this.

Wheelchair Accessible Car For Sale

Kia Sedona 2007 – 2.9 Diesel. Mileage 50,000 kph. Colour: Silver. Owner: 1. NCT: July 2018. Transmission: Automatic. Cost: €4,000. Extra Information: Wheelchair access conversion. Seats five people (four seated plus one wheelchair user in their wheelchair). Lowered floor. Headroom: 59”. Fold out ramp. Wheelchair securing system. Great condition. Leather seat upholstery. Tinted glass on cabin. Front electric windows. Air conditioning with rear outlet. Central locking.

For more details phone 086 8474721 or email: [email protected]

MDI News Update Page 15 Issue 72 - Spring 2018

n Thursday 25th January last, Laois County Civic Reception for MDI Council held a Civic Reception for MDI mem- bers Aoife McNicholl and Emer O’Sullivan, at members Aoife McNicholl O Aras Chontae, Portlaoise, The reception was an acknowledgement for Aoife and Emer’s participation at and Emer O’Sullivan the Powersoccer World Cup last year in Florida. In attend- ance were Laois County Councillors, AIPF Secretary Donal Byrne, AIPF Chairperson of the Board, Adrian Henchy and FAI Football for All Coordinator Oisin Jordan.

Both ladies (who along with six other MDI members) have represented Ireland on the world stage. A first for Laois. The speeches given by the panel were excellent and it was an honour to be invited to the Civic Reception.

As a fellow Laois lady l was extremely proud to celebrate the ladies achievement. Well done Aoife and Emer and all the Pow- er Soccer Team. Picture left to right - Amy Bramley Cllr Willie Aird, Cllr Katherine Fitzgerald, Aoife McNicholl MDI, Cllr Padraig PR & Fundraising Coordinator Flemming, Emer O'Sullivan MDI and Cllr Mary Sweeney Muscular Dystrophy Ireland

The Grand Final of the innaugural Big Ireland Quiz took place on Saturday 26 th January in DTwo Hotel, Dublin, with the winners the 'Clueless' Team from Co. Kerry taking home the €1,000 cash prize

Congratulations also to the 'My Mates In The Corner' Team from Co. Dublin who fin- ished runners-up and won the €500 second prize, as well as all the other teams who qualified for the Grand Final.

We would like to thank everyone who has been a part of the first edition of the Big Ireland, from our sponsors to our hosts and all the partici- pants of our events around the country. Your support has helped to raise over €7,750 for MDI.

A special thank you in particular to Dan, Karen, and everyone at the Irish Quiz Organisation, as well as the staff of Muscular Dystrophy Ireland who have made the Big Ireland Quiz such a Winning team being presented with their success. We're already looking forward to the prize by Elaine McDonnell and Patrick next installment later this year. Flanagan from MDI.

Membership Subscriptions now due

This is a reminder to all members of MDI that it is now time for you to renew your MDI membership subscription for 2018. Membership runs from the 1 st of January to 31 st of December each year.

Please find enclosed with this newsletter an MDI Membership Form for the current year. We hope that you will be renewing your membership and we would ask you to complete this form and return it to us before 30 th of March 2018. This form is also used to ensure that we have the most accurate information on members and their specific conditions, so please help us by completing the information on the back as well.

If you have an e-mail address, and would be happy for us to use that, please include it as this will help us become more efficient and reduce costs by corresponding with you by e-mail.

The closing date for receipt of membership fees is Friday the 30 th of March 2018. Please note that in order to have a vote at the Annual General Meeting (or any Extraordinary General Meetings) or to serve on the MDI National Council or Executive Committee, membership must be paid prior to this date.

Newsletter of Muscular Dystrophy Ireland MDI News Update Updates on research, information, fundraising, social activities and upcoming events. Issue 72 - Spring 2018

LOVELOVE MDIMDI AwarenessAwareness CampaignCampaign 12th to 18th February 2018 The LoveMDI Awareness Campaign 2018 will take place from 12th to 18th February.

As ever, MDI will have our Lily O’Briens Chocolates available for sale as well. Once again we are asking for a deposit of €30 for boxes that are for public sale. These can be ordered online, by phone, or by email. Check out our Facebook page from 12th to Friday 18th February to see how you can take part in the LoveMDI Campaign this year. For further information contact Patrick or Amy (01) 6236414 or email [email protected].

100% OF TEXT COST GOES TO Please Support MUSCULAR DYS- TROPHY IRE- LAND (MDI) across most net- Text MDI to 50300 work providers. Some providers € apply VAT which to donate 2.00 means a minimum of €1.63 cent will go to Your donation will be much appreciated. MDI. Service Provider LIKE CHARITY. Helpline: 01 4433890 Company registered name: Muscular Dystrophy Society of Ire- land Ltd. Company registered office: MDI House, 75 Lucan Road, Chapelizod, Dublin D20 DR77 Country of registration: Ireland Charity No: 20012038 Directors: Helen McDonnell, Grace Greene, Hazel Bridcut, Ephraim Purcell, Maureen Brennan,

John Roche, Garry Toner. To Contact Us: Phone: 01 6236414 Fax: 01 6208663 Email: [email protected] Website: www.mdi.ie

MDI QR Code Scan the image on the left with an iPhone or an Android mobile phone using any QR code reader to also access the MDI website .