Campaigning for Targeted MND Research Funding
I am a software engineer and salesman, by trade, with over 30 years experience in IT. After being diagnosed in 2014 with MND I decided to stop work, partly because of the sheer demands of travelling, but largely because I simply didn’t know how long I had left!
Such is this disease’s reputation.
And in the 7 years since diagnosis I have seen the sheer brutality of the disease. Having an apparently slow form of the disease has given me the opportunity, almost a duty, to advocate. I was spurred on by a leading UK scientist and his words to me…
“Lee we don’t get many who live long enough to speak up”
Before embarking on my working life, I was a Student Biologist at Imperial College, London back in the glorious 1980s. I indulged my mind as a keen scientist. It is against this backdrop that I often now write in my blog onein300.com on the challenges our researchers face with research trials and the inevitable, but totally understandable, clamours for approvals of as yet unproven treatment candidates.
However, I genuinely believe that today, we are on the cusp of major breakthroughs that will lead to MND becoming, certainly for some forms of our disease, a manageable chronic condition within just a couple of years. Yes it’s that close.
I work closely with the MND Association in the UK and my primary interests lie in raising awareness and promoting increased research funding with government.
But, everyone, life is for living, so don’t get too bogged down and take breaks!