Each year since 2008, hundreds of supporters have taken part in the Myotubular Trust Hope Walks. We all walk with the same hope in mind - raising research funds to find a cure or treatment for myotubular (centronuclear) myopathy.

Myotubular myopathy is a rare and devastating muscle weakness, affecting mainly boys, from birth. It severely affects the muscles used to swallow and breathe. These babies & children are at a constant risk of dying, and usually from complications due to simple colds and coughs from which they are literally too weak to recover.

There is no public funding available for this rare condition - the research that has been funded is all thanks to the support of those living with the condition, and their families, friends and colleagues. We simply wouldn't be able to continue to fund world-class research projects without our supporters.

Thanks for supporting us, and helping to bring forward the day when there is a cure or treatments for this devastating condition.