Myotonic Dystrophy Support Group

Funding the Myotonic Dystrophy Patient Registry

There is no therapy or cure for Myotonic Dystrophy, but this may well change with recent advances in research. The UK Myotonic Dystrophy Patient Registry has a vital part to play in accelerating the transition from basic research to human clinical trials, but is underfunded beyond 31st Dec 2012.

history Campaign has now closed

It ran from 12:00 AM, 1 January 2013 to 12:00 AM, 1 December 2013

Registered Charity in England and Wales (1134499)

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Situation

The Medical Research Council launched the UK Myotonic Dystrophy Patient Registry in Newcastle in 2012 with the aid of £7,500 from the Myotonic Dystrophy Support Group and £7,500 the Muscular Dystrophy Campaign to meet a funding shortfall in the first year. A further £15,000 is now required to keep the Registry going throughout 2013. In the longer term, running costs of the Registry will be subsumed within the budgets of human clinical trials.

Solution

By raising £7,500 towards the £15,000 required to meet the running costs of the UK Myotonic Dystrophy Patient Registry in 2013. The UK Myotonic Dystrophy Patient Registry will approach other donors, including the Muscular Dystrophy Campaign, to fund the remaining £7,500.