A voluntary organisation which offers essential services to people affected by muscular dystrophy is appealing to the Government to stop cutting its funding.

Muscular Dystrophy Ireland (MDI) provides information and support to those affected, including family support, transport, assistive equipment and emergency respite.

Muscular dystrophy is the collective name for a range of of neuromuscular conditions, which cause the progressive weakening and wasting of muscles. Around 1,500 people have the condition in Ireland and there is currently no cure.

This week, MDI held an open forum with members of the Houses of Oireachtas in an attempt to highlight the difficulties faced by those affected, and to ensure that their needs are at the centre of party manifestos and any future programme for Government.

TDs and Senators who attended the forum were given details about five key actions that are required to help those affected:

-Stop funding cuts to MDI. Since 2009, MDI funding has been cut by 20%. Any further cuts will have a negative impact on the supports and services that the organisation provides

-Increase funding for personal assistant services provided by the HSE. Many people with muscular dystrophy need a personal assistant to live independently, for example to go to school, college or work. However recent meetings with the HSE suggest that the current focus is moving towards basic personal care and hygiene, rather than enabling people to live independently

-Provide appropriate grant funding and accessible housing. Many people with muscular dystrophy are living in unsuitable accommodation, as they are either waiting for a suitable council house to become available or they are waiting for approval for home adaptations

-Provide an early access fast-track programme for new therapies. For example, one therapy, Translarna, can slow the progression of Duchenne muscular dystrophy in specific patients. However, while available in some European countries, it is not yet available here

-Establish a neuromuscular clinical trial site in Ireland for emerging therapies. Currently, there is no centre for muscular dystrophy research in the entire country. People who wish to access the latest therapies and treatments have to go abroad.

"Political parties and the next Government need to recognise that the huge sacrifices made by the Irish people in recent years have been perhaps most acutely felt by some of the most vulnerable in our society.

"With continuing good news on the economic front and Ireland's recovery firmly taking off, it is people with muscular dystrophy, and people with disabilities in general, who should now be a key focus for policymakers in providing appropriate supports and in overcoming the considerable burdens that they face," commented MDI chairperson, Garry Toner.

He called on all political parties to ‘sign up to these five commitments and set a timeframe for their implementation if elected'.

For more information on MDI, click here