In 2018 I ran a 7-day foot race in the Alps with my wife. In January 2019 I stopped running, because I kept falling over. In May 2019, at age 43, with two school-age kids I was diagnosed with Motor Neurone Disease (MND, also known as ALS).

I hope you never have to experience this disease. It means progressive loss of voluntary movement, in my case starting with one leg but now spreading to my hands. I can expect to lose the ability to walk, sit up, hold my head up and eventually speak, swallow, breathe. It is rare, but not all that rare - a one in 300 lifetime risk. A healthy lifestyle doesn’t seem to reduce your risk, in fact athleticism may increase it. There is no cure, it progresses unpredictably and there is virtually nothing you can do to slow it down (one drug, riluzole, extends life by 2-3 months).

After the initial shock had passed - and just three weeks after the diagnosis - my wife and I took our kids and headed to Europe for the road trip we had always wanted to do. Now we're back home in Frome, UK and trying to find some new kind of normal existence.

Since I have limited time left, it’s really vital to me to live with purpose. Living with this disease and hearing from many others in the same predicament I know too well how destructive it is. I want to do what I can to bring closer the day when the disease can be slowed down, halted or even reversed.

This nightmarish disease need not remain untreatable. Knowledge is advancing with each new research project. Please support me and the Motor Neurone Disease Association in funding research towards a cure.