I spoke in the Scottish Parliament earlier today in a debate marking Motor Neurone Disease Global Awareness Day 2017. You can read my contribution to the that debate here:
I remind members of my entry in the register of members’ interests stating that I give all my external earnings to MND Scotland. I thank Christina McKelvie very much indeed for hosting today’s debate. As she mentioned, she has a long-standing, passionate interest in the disease and a long-standing commitment to finding a cure for it.
Christina McKelvie referenced the news that we heard today about Doddie Weir, that great Scotland giant of the rugby field, who faces his own MND diagnosis. She mentioned that this is not the first sports star we have heard of who has the condition. We can think of Fernando Ricksen, Jimmy Johnstone, Joost van der Westhuizen—the South African rugby player who used to torment Scotland on the rugby field—and even Lou Gehrig, who was an American baseball player in the 1920s who got the disease. For many years in America, MND or amyotrophic lateral sclerosis—ALS—was called Lou Gehrig’s disease in his memory.
There is undoubtedly a link between MND and sport—at least, we think that there is; we do not know, because we do not really know enough about MND and why people get it. That is why we have to do more research to find out about the disease and to find a cure.
We think that there is a link between getting head and neck injuries and getting MND, but again, we do not know, which is why we need more research money. We think that 5 to 10 per cent of people who get MND get it genetically and about 90 per cent of people get it through environmental factors, but again, we do not know.
My dear friend Gordon Aikman was an international gymnast for Scotland. He could have been one of the sports stars who get the disease because of their history of competitive sport, but we do not know, and he will never know. The last time I saw him was at the Euan MacDonald centre, when I was visiting to see much of the work that I know Christina McKelvie has seen over the years. Gordon and I were shown fantastic new research that the University of Edinburgh had done using zebrafish. Those tiny little fish can grow motor neurone cells, which regenerate themselves to affect muscle tissue, speech and many other functions. Experts at Edinburgh university now think that they can produce drugs that will help zebrafish to multiply those cells in their bodies. Once the experts have cracked that, they will be able to use that technology in humans and perhaps get humans to regenerate their own motor neurone cells, which could lead to finding a cure for the disease.
It was truly inspirational to see that work, which has global and world-leading potential, but it is poorly funded. Three countries in the world could find a cure for motor neurone disease: Canada, Israel and Scotland. Would it not be fantastic if it was Scotland that set a national ambition to be the country that found the cure to motor neurone disease? I appeal to the Scottish Government to take on that idea.
When I left the Euan MacDonald centre, I kissed Gordon goodbye and said that I would see him later, but I never did. For as long as we debate motor neurone disease in this chamber, I will speak in his memory and say some of the things that he would want us to talk about.
Christina McKelvie touched on my next point. We cannot ignore the fact that today is the day of the Queen’s speech, which will contain further cuts to the social security system that we collectively built as a nation. One of the things that the Tories will cut is the Motability scheme, which Gordon used. He got a Jeep—a high car that he could climb into without having to move his legs too much. It was adapted so that he could use the gear stick, and it had additional sensors that acted faster for him whenever there was a danger, so that he could respond in time. That car gave him the freedom and independence that he needed for three months when he was still able to drive. I am not sure that he would get that today under the Tories, and I sincerely regret that.
We have powers in this place over personal independence payments, disability living allowance, attendance allowance and carers allowance. We have the power to guarantee automatic entitlement to benefits. Like Christina McKelvie, I very much hope that the Scottish Parliament will grab that opportunity and run with it.
Today is MND global awareness day. We must remind ourselves why we have to keep explaining what MND is and keep telling its story. As Christina McKelvie said, we do that because many people who get MND die so quickly. It is not commercially viable to spend money on researching the disease because people die too quickly to get the drugs that are needed to cure it. That is why each and every one of us who has been affected by MND needs to use that experience to speak up about the disease and aspire to find a cure here in Scotland.