Hi, I’m Grant. I’m 44 and I have a condition called Multi-Focal Motor Neuropathy with Conduction Block. It is a degenerative disease that destroys the myelin sheath around the motor neurons and currently stops the muscles in my hands from working properly. Basically my brain sends a signal, but it never gets to my fingers because the wiring has been damaged.
There is no known cure for my condition, but I’m very lucky because there is treatment available. In my case I was having high-dose intravenous immunogloblin (IvIg) therapy for four days every eight weeks for twelve years, my doctors tell me that this treatment is a type of chemotherapy. It certainly feels like a kind of chemotherapy, and keeps me off my bicycle for a couple of weeks while I recover. Over the last year I’ve been going through a process to change my treatment from IvIg to subcutaneous immunogloblulin (ScIg) and had my first treatment in June 2014.
I have chosen to support Action Medical Research, not only because they carry out research into several conditions and diseases that are very closely related to mine, namely Motor Neurone Disease and Guillain-Barré Syndrome – but also because they fund research into lots of other different diseases and get results.
In July 2005 I cycled a gruelling 300 miles over 4 days from London to Paris with Action Medical Research, and I raised £2,739 to help Action Medical Research fund more research programmes, hopefully they will one day provide the funding for whoever finds a cure for Multi-Focal Motor Neuropathy. They have had some other major successes in the past, you may of heard of them – or even benefited – polio vaccine, ultrasound scanning in pregnancy and the hip replacement operation to name just a few.
In June 2011 I cycled from London to Paris again, this time in 24 hours as a relay with my good friend Gavin, who I’ve ridden with on other charity events before. We raised just over £2000 for Scope.
Give what you can, and make sure you tick the Gift Aid box, so the charities I do these extreme events for can get another 28% back off the tax man.
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