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07 January 2010

Spin for SAM on Friday 15th January

On 15th January superstars from British and World Superbikes and the Belfast Giants are coming together for a 12 hour SPIN FOR SAM at the Ramada Hotel, Shaw’s Bridge.

Two full years have now gone by since Tracy McCausland and her husband William received the awful news that their beautiful little boy Sam – who was then just 1 year old - has a progressive muscle wasting condition called Congenital Muscular Dystrophy…

Muscular Dystrophy affects thousands of children in the UK, and causes the muscles of the body to gradually waste away. Children become dependent on wheelchairs at a very early age and as the muscles continue to waste they become quadriplegic, suffer from scoliosis (twisting and distortion of the spine) and develop painful muscle contractures. They also lose the ability to breathe and eat without assistance.

At this moment there are no effective treatments or cures for any of this group of over 40 neuro-muscular conditions. As a rare disease, the form of muscular dystrophy from which Sam suffers (merosin deficient congenital muscular dystrophy, MDC1A for short) has until now been largely ignored in research and drug development.

Tracy explained “In April 2008 we set up the charity “Struggle Against Muscular Dystrophy. Just over one year on, with huge support both financially and emotionally from the people of NI and a number of extremely successful fundraising events under our belts, we have raised almost £200,000!”

“One of our core commitments was that we would establish and run as a ‘zero cost’ charity – in other words everyone involved with the charity would give freely of their time, expertise, products and services so that we could be in a position to promise faithfully that every pound we raise can go to research to help bring an effective treatment and eventually a cure one step closer.”

True to their word SAM recently announced grant funding totalling over £175,000 to evaluate 3 promising CMD drug candidates in 2010: an NFKappaB inhibitor, laminin 111, and a muscle specific IgF upregulator. A separate effort to identify disease biomarkers specific to merosin deficient CMD (MDC1A) will also be funded by SAM in association with international CMD advocacy group CureCMD. Each application received during this year’s grant process was subjected to a rigorous review process that included outside peer review and Scientific and Medical Advisory Board evaluation.

“We believe that a focused investment in science will lead to CMD treatments which will bring hope to the many thousands of families whose lives have been affected by Congenital Muscular Dystrophy” announced Gillian Garrett, Chairperson of SAM. “It is now critical that we maintain this level of funding into the subsequent years of these projects” she added.

On 15th January superstars from British and World Superbikes, including Jeremy McWilliams, Johnny Rea, Eugene, John & Michael Laverty, Ian Lowry, Loris Capirossi, Leon Hasslin and Cal Crutchlow and local sporting heroes Keith Gillespie, Gordon Crockard, Jackie Fullerton, Stephen Watson and the Belfast Giants are coming together for a 12 hour SPIN FOR SAM at the Ramada Hotel, Shaw’s Bridge from 6.30am until 6.30pm. People are invited to book themselves in to Spin with the Stars for an hour or more, with a minimum donation of £10 per hour by emailing info@helpsam.info. The event is being run in conjunction with the Irish Racer Awards.

“I am totally delighted at the involvement of all of these big names from the world of sport. Their support of SAM will help to bring attention to the great work that the charity is involved in. It moves me that people are so supportive of our charity – and the generosity of people especially in such a harsh economic climate is staggering. “ said Tracy.

Plans are also afoot for this year’s EMERALD BALL, which will be held in the Europa Hotel on 13th March. This promises to top even last year’s event, which was a huge success for the charity. We can reveal that the 2010 event will be hosted by Jimmy Nesbitt and Emma-Louise Johnston. Information about this and other fundraising events are available on the charity website www.helpsam.info.

Tracy added “I know that none of us know what the future holds for our children, but in Sam’s case we do know what lies ahead – and it is a life of suffering and pain UNLESS we can find a treatment or a cure. The work we are doing in raising money to fund research through the SAM charity gives me hope. There is great cause for optimism that within the next 5 years we will at least have an effective treatment to slow the rate at which the muscles are wasting.

This will potentially buy us a little more time for the scientists to find a cure – and that dream ignites and sustains the passion I have for raising the vital funds that will help maintain the research. I dream that Sam and all the other children who suffer from CMD will have a real chance of having a brighter future than the one currently predicted for them. Please help us to make that dream a reality.”

For more information visit www.helpsam.info

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