I am joining the 2025 London Hope Walk to raise funds to find a treatment for myotubular and centronuclear myopathy.

Myotubular (centronuclear) myopathy is a rare & 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 - usually from complications due to simple colds & coughs from which they are too weak to recover.

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

Thanks for helping us in our journey to bring forward the day when there is a cure or treatment for everybody living with this condition.

100% of your donation will be used to fund future research projects - all running costs are raised independently.