Parliamentary Lobby 18th June 2008  - (Click on the photos to enlarge)

On Wednesday June 18th sufferers of Duchenne and Becker Muscular Dystrophy gathered at Westminster to lobby parliament and ask them to redress the historically poor levels of research funding over the last 10 years by ring fencing £30m of funding for new research and clinical trials.

Duchenne Muscular Dystrophy (DMD), which effects boys, is an invariably terminal muscle wasting condition which causes muscles to waste away to the point that sufferers are usually wheelchair bound by age 10. As muscles continue to deteriorate boys with the condition find themselves reliant on feeding tubes, ventilators and eventually heart support. Few young men with the condition survive into their twenties. At present there is no treatment and no cure.

The ‘Please Fix Sam’ campaign in Northern Ireland is run by the new charity ‘Struggle Against Muscular Dystrophy’ (S.A.M.) and aims to increase public awareness of the condition and to raise vital funding for research. The goal is to raise £500,000 over the next two years. Tracy McCausland, parent of Sam McCausland - aged just one, commented:

“It is devastating to find that your child is suffering from such a horrendous condition. It is even more devastating to discover that there is a lack of funding for vital research which could eventually promise Sam - and other young victims of Muscular Dystrophy - the chance of a treatment which could at least slow the progress of this disease. There have been promising developments in research over the past two years, but without funding these potential drugs cannot progress to human trials, and given that these little boys do not have the luxury of time this must be urgently redressed. We are hoping that the government will sit up and take notice of the fact that they have the opportunity to effectively change the futures of these little boys.”

At the parliamentary lobby sufferers of the disease and their families also called upon the government to increase the number of Centres of Excellence for Translational Research into this condition to cover the whole of the UK. At present families such as the McCauslands must travel to the UK for the specialist care needed to manage and monitor progress of the disease.

Also attending the lobby were another family from Dromara, who have only recently discovered that their 3 year old son, Carter, also suffers from the disease. Carter’s mum, Julie Dalzell, pleaded:

“We need people to sit up and pay attention to the terrible suffering caused by this disease. Without funding for research our little boy will be robbed of a future and our hopes and dreams for him will lie shattered.”

At the lobby Tracy, Julie and Carter’s dad Noel, had the opportunity to meet with local MPs including new First Minister Peter Robinson, Jeffrey Donaldson, Arlene Foster, Nigel Dodds and Dr William McCrea. Tracy said:

“They were hugely supportive of our campaign and said that they would do everything possible to help us in our quest for greater funding and awareness of Muscular Dystrophy”.

Struggle Against Muscular Dystrophy (S.A.M.) have set up a website www.pleasefixsam.com which gives detailed information on the condition as well as information on fundraising events.