My little buddy Tom passed away 15 years ago this year from Myotubular Myopathy. We're keeping Tom's legacy burning bright by taking part in a walk organised by the Myotubular Trust this weekend across London. This was supposed to be a nice easy stroll but I fell down a rabbit hole chasing a ball and have bust my ankle, so am going to attempt to do this on crutches. Rather ironically, the above photo shows me and Tom the last time I busted my ankle...

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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 they have funded is all thanks to the support of those living with the condition & their families, friends and colleagues. They simply wouldn't be able to work towards finding a treatment without our help.The Trust has the backing of the most eminent researchers in the field. "Money is absolutely required to fund research...this is where charities like Myotubular Trust have great value. It takes enthusiastic people to bring things ahead of schedule", Professor Francesco Muntoni, Myotubular Trust Scientific Advisor 

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