Eamon Scanlon (Sligo-North Leitrim, Fianna Fail)

I am pleased to have an opportunity to speak on this important issue. Last month, I met with representatives of Muscular Dystrophy Ireland who held an information session in Buswells Hotel. Although I had some awareness of the issues as a member of my family suffers from Duchenne muscular dystrophy, I was shocked and saddened by what I learned. We must ensure there is greater awareness of this debilitating illness.

Muscular dystrophy is the collective name for a range of neuromuscular conditions which sees those affected suffer from progressive weakening and wasting of the muscles. It can affect both adults and children, with some forms of the condition arising at birth or in childhood and others not manifesting themselves until later in life. Muscular dystrophy arises from a genetic mutation and people can carry the defective gene without realising it. This gene is inherited from one or both parents in most instances, which means there may be more than one member with the condition in a particular family.

There is no cure for muscular dystrophy. However, I am informed by Muscular Dystrophy Ireland, which does great work in this area, that there have been major advances in increasing the quality of life for people with the condition. Furthermore, scientists throughout the world are working hard to develop new treatments. Treatments that can improve the quality of life for sufferers include physiotherapy, occupational therapy and surgical intervention. Along with ensuring greater awareness and understanding of the condition, we must support those suffering from it as best we can.

There has been some progress in this area. Therapy services for adults with muscular dystrophy are generally delivered through primary care teams or community therapy services. The numbers of therapy staff employed in primary and continuing community care settings has increased significantly. In December 2007, there were 638 physiotherapy staff and 789 occupational therapy staff. By the end of 2008, those staff numbers had increased to 670 and 796, respectively.

Therapy services for children with muscular dystrophy can be delivered through specialist disability providers or through primary and community care services. The Government is committed to delivering primary care in a local setting and it is my hope that those with muscular dystrophy will benefit from this investment. Furthermore, resources have been allocated to increase the level of multidisciplinary supports available to children with disabilities in the context of the implementation of the Disability Act 2005 and the Education for Persons with Special Educational Needs Act 2004.

Duchenne muscular dystrophy usually affects children between the ages of two and six and has a major impact on their life expectancy. Duchenne muscular dystrophy eventually affects all voluntary muscles as well as the heart and breathing muscles. Survival is rare beyond the early 30s. It is a worst nightmare for any parent to learn that his or her child is suffering from a debilitating and incurable illness. Muscular Dystrophy Ireland has indicated that 88 of its members are suffering from Duchenne muscular dystrophy. In the past ten years, 59 boys and young men with Duchenne muscular dystrophy have died as a result of their condition. It is important that Deputies have been given an opportunity to discuss what is a nightmare scenario for many parents. For this reason, I commend Deputies McHugh and Doyle on tabling the motion.

According to its mission statement, the objectives of Duchenne Ireland are to raise awareness of Duchenne muscular dystrophy at local, national and government level and to raise funds to go directly to researchers and clinicians who offer the best chance of developing improved therapies that will benefit this generation of sufferers. The organisation also works towards achieving an infrastructure which is on a par with best international practice and aims to fund translational research for Duchenne muscular dystrophy which will move towards the clinic within a defined timeline. It encourages applicants to have in place a clear path to the clinic if work is successful, in other words, to have a plan for success.

Duchenne Ireland has set the following immediate goals: to raise funds aimed at translational research into Duchenne muscular dystrophy and associated grant calls to ensure the money is best used in a timely manner; to lobby the Government to play its part in driving research forward for Duchenne muscular dystrophy; to inform parents about the therapies and standards of care available for those with the condition; to raise awareness of Duchenne muscular dystrophy at local, national and Government level; and to increase Ireland's ability to play a key part in Duchenne research through industry, patient and Government co-operation.

Muscular Dystrophy Ireland also does terrific work in this area, providing information and support to people with neuromuscular conditions and their families through a range of support services. It offers a lifeline for sufferers and their families and helps empower sufferers and supports them to lead independent lives. Last year, the organisation received €3 million in Government funding. Funding should be made available to both Muscular Dystrophy Ireland and Duchenne Ireland to ensure young people with these conditions have a chance in life. Given the significant benefits research funding could deliver, I implore the Minister to ensure funds are made available for clinical trials in the area of Duchenne muscular dystrophy. While I am aware that resources are scarce, those suffering from this disease should be supported in all possible ways.

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