Home Features “I Am Fortunate In A Way That Two Years In, I Am Still Here”

“I Am Fortunate In A Way That Two Years In, I Am Still Here”

For the 11th successive year, Ireland v England Legends will take place on the eve of the corresponding Six Nations fixture between the two countries. 

The fixture sees some of the top personalities and legends from the rugby community play against each other to raise money for rugby related charities.

This year, the match will be played in aid of the My Name’5 Doddie Foundation, the trust set up in the name of Scotland legend Doddie Weir, who was diagnosed with Motor Neurone Disease in June 2017.

The former British and Irish Lion was speaking to the media this week ahead of the match which will take place in the RDS on Friday, February 1 and he spoke about the areas in which £1 million raised by the foundation was spent last year.

Doddie Weir

“Where we are is we are able to see that MND is quite a complex issue. It’s not an easy fix but the annoying thing for myself, and why we went ahead, is that there is nothing new on the table in the last 25 years and that is outrageous,” Weir said.

“The people with MND, it is a terminal issue and the average life expectancy once diagnosed is about three years. I am fortunate in a way that, two years in, I am still here. So what we have been able to do is fund gene therapy which has come a long way the last five years. That is in King’s College in London. We have also helped Edinburgh University in the repurchasing of drugs.”

Weir speaks about his frustration throughout the conversation about the lack of progress made in the last 25 years towards a cure for the terminal illness. The main issue in Weir’s eyes is that although there has been a lot of research conducted into MND, the step between research and clinical trials is proving to be too big at the moment.

Doddie Weir

“We have a group of professors that we meet on maybe a six-month basis and building up a rapport with them. What we are going to try to fund is clinical trials. The research is there but we have got no money to bring the clinical trials out to the patient. So we need that to happen and the foundation is going to try and propel them into the market.

“It’s a bit like you’ve designed a car engine that can go 220 miles an hour but you can’t test it to see if it actually makes it or not. That’s how bad the situation is: there is no track or no race driver. MND is exactly the same in the drugs industry at the moment. They have got certain things that are ready to go but they don’t have the funding to get it over the line so we have pledged another million pound towards research in the next year. Ultimately, the goal is that myself and a lot of others can stick around and annoy you all with some more horrendous fashion!”

One thing that strikes anyone who meets Weir is his positivity, he immediately lights up a room with his personality and his outlook on life is hugely admirable, especially considering the tragic situation that he and his family find themselves in.

“As I mentioned, the life expectancy is not very good. Why am I quite positive? Well we get emails to the foundation and I got one a wee while ago saying that this gentleman from Yorkshire…it was from his brother in law, it said ‘big man, keep up the good work’ because this fella was diagnosed in September 2017 and died in December 2017, he was 38 years of age and had two kids, two and five.

“So when you hear about that, I’m 10 years further on, the kids are 10 years further on and what have you got to grumble about?”

Weir continued: “When you look at what’s happening in the world and you can see that someone else looks a lot worse than you, you feel so much better, and that’s a similar issue, there’s a lot of people worse off than me, so don’t grumble, get on and we’re just phenomenal with the fight to try to make a difference.”

Doddie Weir

A huge part of Doddie’s journey is about raising awareness – highlighting the nature of the disease, how it impacts families and also the lack of progress that has been made in the last quarter of a century in tackling it. Doddie hopes that the February 1st clash will be another step on the journey to defeating it.

“And that’s where, I think, I’m coming from but it comes about from the support, from meeting you guys today, which is phenomenal. It’s helping me, it’s helping awareness, it’s helping with the most amazing game on the first of February as well and it’s all working as a team to try to find this ultimate cure, and that’s what life’s about.”

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Doddie Weir was speaking to media in Dublin today ahead of the Ireland v England Rugby Legends match taking place in the RDS on Friday, 1st February. All proceeds from this great event will be split among the My Name’5 Doddie Foundation, Rugby Players Ireland Foundation, Restart Rugby, the IRFU Charitable Trust and Irish motor neurone charities.

 For tickets search #RugbyLegends or visit Ticketmaster.

About Sean McMahon

Sean is Head of Pundit Arena Rugby. Contact him on Twitter here: