Muscular dystrophy is a collective term for a variety of neuromuscular conditions characterised by the progressive degeneration and weakening of muscles which can affect both adults and children.
Muscular Dystrophy Ireland is a small voluntary organisation with a membership of approximately 500 spread throughout Ireland. Its primary objective is to provide support for people with muscular dystrophy and their families through the provision of a range of support services eg. counselling, freefone, respite services, holidays, youth activities, independent living and training opportunities. It also funds medical research.
The Muscular Dystrophy Society of Ireland was founded in 1972. The Society's Head Office is at the Carmichael Centre for Voluntary Organisations. There are two other offices in Cork and Galway.
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The Society is concerned with all neuromuscular conditions including the motor neurone diseases and spinal muscular atrophies, hereditary and idiopathic peripheral neuropathy, such as Charcot Marie Tooth disease, disorders of the neuromuscular functions such a myasthenia gravis and with various myotonic disorders and myopathies such as arthrogryposis. For further medical information on these conditions see Other disability WWW links
Muscular Dystrophy Ireland is an active member of the European Alliance of Muscular Dystrophy Associations (EAMDA). The present chairperson of MDI was Secretary General of EAMDA from 1987 to 1992. The general secretariat of EAMDA, which rotates between member associations every two years, was in Dublin from 1988 to 1990. As a member association of EAMDA, MDI shares in any medical or scientific progress that is made in the field. MDI is also involved in the EAMDA Youth Organisation (EYO) of EAMDA, and sends representatives to events organised by the EYO. MDI is a member of the Disability Federation of Ireland, and maintains close links with the Centre for Independent Living who are also based in the Carmichael Centre.
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Muscular Dystrophy Ireland employs four Family Support Workers. Their role is to visit members and their families in their own home and to identify, evaluate and advise on the problems that may arise from neuromuscular conditions including welfare issues. The Family Support Worker is also available to liase with other professionals - such as public health nurses, social workers, physiotherapists or occupational therapists who are working in the various Health Board areas. The Family Support Worker also works closely with MDI's Information Officer, whose role is to gather and disseminate information on the different types of neuromuscular conditions and on the various benefits that our members are entitled to. The Information Officer makes this information available to the affected families, and to other interested parties.
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Muscular Dystrophy Ireland, Head Office, Carmichael House, North Brunswick St., Dublin 7, IRELAND. Telephone: (+353 1) 8721501 Fax: (+353 1) 8724482 Muscular Dystrophy Ireland, Muscular Dystrophy Ireland, Cork Office, Galway Office, Unit 5R, Courthouse Chambers, Cluain Mhuire, Washington St., Monivea Road, Cork, Galway, IRELAND. IRELAND Telephone: (+353 21) 274991 (+353 91) 771530 Fax: (+353 21) 271165
MDI helps organise various youth activities for its younger members. Recently it has become the MDI Youth Club. Their activities include youth club meetings, cinema trips, fishing trips, shopping and wheelchair hockey. There are also Christmas parties (for those who want Santa AND those who don't) and Hallowe'en parties. MDI Youth Club is not just your usual organisation for young disabled people. They are integrated with youth clubs for other young people. Members take part in courses and holidays run by Foróige, one of the biggest youth organisations in Ireland. The Youth Club is also affiliated to Comhairle le Leasóige.
Holidays are also organised by MDI. There has been a holiday during the last few summers in Kildare, Donegal, Galway or Fermanagh (Northern Ireland). These camps aren't just on the island of Ireland, MDI Youth Club members have been further afield.
Just as MDI is involved with EAMDA, the younger members of MDI are involved with the EAMDA Youth Organisation or EYO.
Members of MDI have taken part in EYO Youth Exchange Programmes in Holland, Germany, Sweden and Finland. MDI has also organised its own exchange program with the Spanish MD association (ASEM) which is partly funded by Léargas, who fund youth exchange projects between Ireland and other countries. This year two MDI members went to the Youth Exchange Programme in Slovenia. Also this year, youth group members went to London. If enjoyment of a holiday is measured by tiredness at the end of it, then they all had a great time. These exchanges and holidays are of great benefit to all who take part.
I hope to get reports from some of those involved with the regular activities of the Youth Club soon.