10 miles to work on a Brompton fold-up commuter bike, a breeze. 100 miles across London and up the Surrey Hills on a Brompton in mid summer? That’s more challenging, in fact it might seem crazy but that’s what Coram Williams and Jim Marshall will be doing on 29 July in aid of the Motor Neurone Disease (MND) Association.

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MND or ALS - Lou Gehrig’s Disease as it is commonly known in the US, is a degenerative and unremitting neurological condition that slowly but surely robs those affected of the ability to walk, talk, eat and, ultimately, breathe. Once they have lost all movement in their limbs and the ability to speak, their sole means of communication may be via an electronic aid (if they can get funding for one) that picks up the movement of their eyes, which may be the only part of their body that still works. Once they have lost the ability to swallow, they will be fed via a tube in their stomach.

But don’t just take my word for it, watch this 60 second video

https://youtu.be/h4gs_6F8lO8

There is no cure and no effective treatment.

33% of people with MND die within a year of diagnosis and more than half within two years. Others typically live between two and five years, although some people survive for twenty years plus. A person’s lifetime risk of developing MND is around 1 in 300 – so 300 people in a packed Wembley stadium or in MetLife stadium watching the NY Giants are likely to get it.

You would think that people living with this dreadful disease would receive immediate help from health and social services to provide necessities such as wheelchairs, hoists, bio-bidets, wet rooms, carers, benefits and the many other things they need to make life in some way tolerable. You would be wrong; along with battling the disease, they and their families face a constant battle to get the support they need.

The cause is particularly important to Jim as his wife Janis lost her father and uncle to MND. She is a trustee of the MND Association and chairs the West London & Middlesex Branch, which is run entirely by volunteers. Coram is keen to support a charity doing such vital work. The money you so generously donate will be used to provide practical help and support to people living with and affected by MND both nationally and in the local branch. Among other things, it may also go to fund the research that we all hope will one day find a cure or, at least, some form of alleviating treatment.

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