Hansard

Like Elaine Smith, I am sorry that Sylvia Jackson has apparently been dumbstruck by laryngitis and is unable to speak in this members' business debate on a motion in her name. In her absence, I thank her for securing the debate and commend Elaine Smith for her comprehensive and moving opening speech.

Thirteen months ago, I knew nothing about Duchenne muscular dystrophy. I had not even heard of the condition until one morning in my mail I received a letter from a woman called Cecilia Keaveney, a member of the Irish Parliament who represents a constituency in County Donegal. She is also a fellow member of the British-Irish Inter-Parliamentary Body, on which I sit as one of the Scottish Parliament members. She told me that three young boys in her constituency had been diagnosed with DMD and that the prognosis was bleak, but that, here in Britain, a consortium that was working in collaboration with scientists in the Netherlands and Australia was developing exon skipping as a possible therapy. I will not attempt an explanation of that therapy, as the science of it is well beyond my capabilities. Suffice it to say that, if the therapy works, it could greatly improve the quality of life and increase the length of life of young men who suffer from the disease. Cecilia Keaveney's concern was that the initial funding for that research project was committed only until 2007 and that further support from the Government was necessary to sustain research into exon skipping.

As a result of that and a follow-up inquiry, I have taken up the matter with our Minister for Health and Community Care. I leave it to Lewis Macdonald to tell the chamber what he has told me about what is being done north and south of the border. It is interesting to note, from the terms of Sylvia Jackson's motion and what Elaine Smith has said tonight, that the survival rate in Scotland is inferior to that in parts of England—a fact that has been acknowledged by the minister in his correspondence with me. I know that we aspire to do better in Scotland and to match the English results.

I do not consider my own efforts to prod matters along on this subject to be anything other than extremely modest. I am grateful to the minister for the very full responses that he has given to my inquiries, which I have been able to relay back to our friend and colleague in Ireland. I describe the story of my involvement in the matter and how I came to learn about DMD simply to illustrate how dependent we are on one another. There are parents of young boys in Ireland who are waiting anxiously to see what our researchers can achieve to improve therapies and survival rates for their sons. That makes us reflect that, in this field of medical research, by looking after our own we are also looking after others and that the international sharing of knowledge and experience is vital. It also gives us, as members, a better appreciation of the value of political co-operation across borders and of the co-ordination of funding and research efforts.

I wish our doctors and scientists every success in their research into DMD, and I commend everyone who is involved in the care and treatment of young people who suffer from this dreadful disease.