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MDI Annual Report 2015

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MDI Annual Report 2015 1 Company registered name Muscular Dystrophy Society of Ireland Ltd. Company registered office 75 Lucan Road, Chapelizod, Dublin, D20 DR77 Country of registration Ireland - 60460 Directors Garry Toner Florence Dougall Derek Farrell Ephraim Purcell Dan Phelan Elaine McDonnell Grace Greene 2 Muscular Dystrophy Ireland Annual Report 2015 Contents Muscular Dystrophy Ireland and Mission Statement Chairperson’s Report A Tribute to Joe T. Mooney MDI Network of Support Who does MDI Support? Information Family Support Respite and Youth Support MDI House and the “Home from Home” Apartment Transport & Equipment Neuromuscular Clinics Advocacy Research Fundraising and PR Contact Details Acknowledgements 3 Muscular Dystrophy Ireland Muscular Dystrophy Ireland (MDI) is a There are now MDI offices in Dublin, voluntary organisation, which was Donegal, Cork, Galway, Tullamore and established in 1972 by a small group of Kells, and MDI staff members are also based people in the west of Ireland to support in the mid-west and south east regions. families who had a member with muscular MDI’s primary objective is to provide dystrophy. support for people and their families who Since then it has grown considerably are affected by muscular dystrophy and and now has a membership of over 650 allied neuromuscular conditions. members and a network of branches throughout Ireland. Mission statement Muscular Dystrophy Ireland aims to condition muscular dystrophy. MDI provide information and support to supports advocating for services to enable people with neuromuscular conditions people with neuromuscular conditions to and their families through a range of fully participate in society and to live support services. Our objective is to a life of their own choosing. MDI also promote, through practical empowerment, aims to support and fund research into independent living for people with the neuromuscular conditions. “MDI is a vital source for people with the obstacles towards making for neuromuscular conditions. It provides themselves a fulfilling and worthwhile a wealth of resources to families life. Their role in the lives of people with and individuals who experience the MD is an essential and fundamental condition. Without the supports MDI necessity that cannot be taken for provides, people with MD would find granted nor considered expendable.” even greater difficulty in surmounting Comment by MDI member in the Members’ Audit 2010 4 Muscular Dystrophy Ireland Annual Report 2015 Chairperson’s Report Dear Members and Friends, available to people who are carriers of neuromuscular conditions, Professor Eileen Treacy, Clinical lead for On Tuesday 15th September our colleague and friend the national rare disease plan, gave an update on Joe T. Mooney suddenly passed away. Joe had been the progress of the rare disease plan in the Republic CEO for MDI since 2001. He oversaw many positive of Ireland, Dr Ros Quinlivin of UCL a neurologist changes to MDI and was at the forefront of making the who is involved with both adult and paediatric care organization what it is today. He was so proud to have spoke about the importance of the transition from the wonderful premises we now have in Chapelizod and children to adult services. We had workshops in the to pull off the coup of having An Taoiseach Enda Kenny afternoon which included health care professionals, an to officially open the premises. On a personal level I independent living workshop gave attendees a chance had known Joe for over 8 years, socially we enjoyed to explore different options for independent living going to the GAA matches with the odd bit of rivalry and a sports workshop gave people an opportunity to when Donegal played Armagh. Joe was a true friend and explore inclusive sports and to try a few new sports out. tireless worker for MDI and is sadly missed. We had our usual fundraising activities, the Ireland From September until March we had no CEO, as BikeFest, The Ladies Mini-Marathon, MDI Annual Chairperson I took on the role of liaison between staff Greyhound Race Night and many others. I would like to and stakeholders. This was a difficult time for the board take this opportunity to thank all our friends and members and staff. However, on 7th March John Bennett was who helped raise funds for the various activities and appointed as CEO of MDI. He will be responsible for supports we organized throughout the year. leading our organisation through its next exciting period of growth and development. He has worked in the disability The LOVEMDI Campaign – our inaugural new sector for more than 20 years, both here in Ireland and fundraising and awareness initiative replaced MDI’s overseas: in Ireland with University College Dublin, the National Awareness Campaign this year which ran Central Remedial Clinic, and the Tipperary Centre for from the 8th to 15th February 2016, coinciding with St Independent Living; in the United States of America with Valentine’s Day. This saw us change our branding to a Temple University; and, most recently, in Botswana, with new catchy colorful LoveMDI logo. IncludeDis, an organisation he founded which provides We had our usual summer camps for members which disability consultancy services to the public sector. I would were oversubscribed to because of their popularity. Our like to wish him all the best in his endeavors. members had fun and a break away from their normal On Saturday 16th May we had a cross boarder circumstances. As always we had great feedback from conference in Queen’s University Belfast. This was the camps. jointly run between MDI and MDUK. The purpose of I would like to acknowledge my sincere gratification to the event was to share information on an All-Ireland the Executive/National Council, staff, volunteers and base. The event included World renowned speakers those who gave their time and energy to the branches such as Professor Francesco Muntoni and Dr Ros across the country particularly in such difficult times Quinlivin. Opening the day, Robert Meadowcroft (CEO for us at MDI. of Muscular Dystrophy UK) commended the work and collaboration between MDI and MDUK. Some of the Go raibh maith agat. speakers, including Professor Francesco Muntoni from UCL, discussed the benefits of a centre of excellence Garry Toner for Duchenne Muscular Dystrophy, Aoife Bradly a Chairperson genetic counsellor outlined some of the fertility options Muscular Dystrophy Ireland 5 A Tribute to Joe T Mooney The morning of the 15th September 2015 is a moment dystrophy and despite many obstacles both had in time that will forever be etched in the history of qualified and worked as accountants. Joe T too grew up Muscular Dystrophy Ireland (MDI) as a sad and poignant in Carndonagh and although he lived in Dublin since the date which has regrettably marked the end of an era for early 1990’s, he had always referred to Donegal as his our organisation. It was on this morning and with great home. He had very strong family values and regularly sadness and shock that we, at MDI, had learned of the traveled to Carndonagh to visit his mother Mai, his sudden and untimely passing of our CEO and esteemed brother and sisters and extended family. His father friend and colleague, Joe T Mooney. Benny died in 2008, yet despite all this heartache, Joe T continued to strive to improve the quality of life for Joe T was appointed as CEO of Muscular Dystrophy people with disabilities across the board. Ireland in July 2001 and for the next fourteen years he provided distinguished leadership and support to As CEO of MDI, Joe T focused a lot of his energies in members, families, colleagues and to the organisation developing unique services for the organisation and as a whole. Prior to his appointment as CEO of MDI, Joe gave his time way beyond the call of duty. Since July T had been involved with the organisation for almost 2001, he had been the main driving force in bringing MDI 20 years previously, when he first became involved to a new chapter in the history of the organisation, with with the Donegal Branch of MDI in the early 1980’s as the planning, development and opening of a unique and a volunteer. Joe T worked and campaigned tirelessly brand new resource centre of excellence and respite over the years to support and enhance the quality of facility for people with neuromuscular conditions in life for people with disabilities in general and not just Ireland. Joe T insisted on playing a full “hands on” for people with muscular dystrophy where he had a approach from day one in the development of this personal interest, given that he had lived with this new facility and throughout the actual construction of condition since childhood. this premises in Chapelizod he was on the building site most days, even on the coldest days of Winter 2010, Despite his disability, Joe T had never let his condition overseeing, insisting and arguing with architects and get in the way from achieving goals. While at college builders to ensure that the highest level of accessibility completing a business studies course in the early 1980’s would be achieved for all disabilities, and the proof Joe T and his late brother Seamus had designed and can now be seen in the fabulous premises which patented a disability transfer aid “The Mooney Buggy”, became the new and permanent Head Office for in conjunction with the Institute of Industrial Research Muscular Dystrophy Ireland in April 2011. This new and Standards (now Enterprise Ireland). The Mooney space is now also Ireland’s first National Resource Buggy was subsequently bought by a UK manufacturer Centre for Neuromuscular Conditions and in addition, for development in 1986. After graduating, Joe T then it incorporates a fully independent and wheelchair ran a successful mushroom business in his home town accessible “Home from Home” self-catering apartment of Carndonagh, Co Donegal for a number of years facility which is available for short term stays for before moving to Dublin in the early 1990’s.
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