Each year since 2008, supporters have taken part in the sponsored Myotubular Trust Hope Walks. Participants all have the same hope in mind....raising research funds to find a cure or treatment for myotubular and centronuclear myopathy.

Myotubular (centronuclear) 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 to Myotubular Trust 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. It simply wouldn't be possible to continue to fund world-class research projects supporters.

Thank you for supporting me.