"Oh no" says Tom! "My mum is asking for money again!"

Please forgive me for popping back up again, fundraising for the Myotubular Trust London Hope Walk - but this year Tom would have been 20 so I thought it was a great year to remind myself why we're doing this.

The journey to finding a cure for this devastating condition has had many highs and lows since Tom was born in 2003. With the help of seriously committed supporters, the Trust has had a big role in pushing the day forward but we are not there yet. If you can help us to keep our research funding going, we'd appreciate that. (If this is not a good time for an ask, we get that too. Please don't worry)

LONDON HOPE WALK

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 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.

100% of funds raised on this page will go into research. The Myotubular Trust raises the running costs of the charity from other separate specific sources.