‘Doddie was angry with us. Now he’s changed the game’

described as pain-in-the-backside persistent so he’s a man after my own heart and I am delighted that the foundation has been able to grant him £400,000 for research.

Dr Chris Shaw, professor of neurology at King’s College, London Honestly, I didn’t know what to expect from the meeting apart from the fact that anybody who was anybody in the field was turning up. I came along and I was really impressed, first by the scale of the ambition, and secondly by the urgency.

How has your perspective on the science behind MND changed working with Chris?

DW Before I thought nothing was being done and I felt incredibly frustrated that in 20-odd years nothing new had come on to the market. But behind the scenes there is so much going on. I didn’t realise there were 1,500 papers published on MND last year, which is like 1,500 steps forward. A big part of our job is to get that message out there to other MND sufferers, that there is exciting stuff going on. There is hope.

CS That’s the thing with Doddie, he was really impatient and almost p----- off with us. He was saying, ‘Guys, you have been in this game far too long and what have you really done?’ I understand that completely. I have been in the field for 25 years and I am pretty p----- off that we have not made more progress.

One of the problems with brain diseases is that it is encased in a very protective environment. It is very difficult to get drugs in there and the brain neurones are some of the most complicated and challenging cells. We explained that we had not made so much progress because of these particular limitations, but there have been some really exciting developments.

If you look at where the research was with cancer 30-40 years ago or HIV 25 years ago, what happened is that they started to be able to grow cells from the cancer, grow the HIV virus and figure out how those diseases were happening. We have reached that stage with the brain now. A whole lot of technologies have developed, particularly around stem cells, which allow us to model the disease in human cells.

What has Doddie’s funding allowed you to do differently?

CS The last grant I wrote was for the Dementia Research Institute. It was worth about £12million, was 90 pages long and took me about six months to compile working full time.

So when someone comes along and says, ‘Give me a two-pager and tell me what you’d like to do as long as you’re ambitious’, I am thinking this is fantastic.

Most of the time, we are doing very safe, slow science. These guys are saying we want to do the riskier stuff and be more ambitious. They are not interested in finding solutions for 15-20 years’ time. DW Our attitude is if it does not work then let’s go on to another idea but let’s try something. My attitude as a rugby player was always if it does not work first time, let’s have another crack.

CS They have given me two years of money and we are going to really bust our nuts to get something substantial out of that and show that we have made progress before we go back and ask for more.

And where do you hope your research can lead you?

CS We are looking at a treatment for 95 per cent of people with MND. Recently we have discovered the protein that is absolutely central to the process of MND. All the other genes feed into this process. If you can have an influence on this protein accumulating, either preventing it or helping it to clear, then you will have a proper therapy. We are pretty sure we have a chance to do that and in the next couple of years we will be able to tell you whether we were right.

The science is at an exciting place. I showed Doddie a video of a remarkable treatment of spinal muscular atrophy, which is the childhood onset of MND. Most kids die in the first couple of years of life. They can never sit up, never walk and most of them will never talk.

By using a virus to deliver the gene that these children were missing, you saw them running around and speaking. We have no more excuses not to be ambitious.

Do you feel pressure due to that?

CS Very much so, not just because of the money but because of the faith he has in the project. What’s extraordinary is that they have raised more money than I have seen anyone else raise in such a short space of time. And by a long way. There are thousands of people out there fundraising and then Doddie comes along and changes the game.

Research into MND is like a slow-moving ship. Doddie has come aboard, seized the controls and got everyone on the ship working harder to go faster. What these guys want to do is kick-start different projects. Not all of them will work but they are prepared to take those risks so that we can take that giant leap for a giant man.

DW Chris’s passion and commitment is infectious. His attitude is let’s keep going to find something and that is the same way I see things. But we could not do any of this without the amazing generosity that we have received since we launched the foundation last November.

Our goal is to spend £1 million in our first year and we are nearly there. I see our job as making sure we are all moving in the same direction and working together. That’s the only way we can make a difference.

It is the same as a rugby team. We’re the forwards, setting the platform by raising the money, so we can give the ball to backs like Chris to do something special.

‘We want to take risks so that we can take that giant leap for a giant man’