Every day, six people are diagnosed with motor neuron disease. The condition, which is so far behind any other illness medically, is still in dire need of funding and awareness. This is what rugby legend Doddie Weir is fighting for.
Scottish rugby legend Doddie Weir was revered for his time performing in the sport, earning 61 caps. Now, Doddie is facing his biggest match: finding a cure for motor neuron disease (MND).
Doddie has been committed to finding a cure and new treatments for MND, after announcing his diagnosis in 2017 on World MND Day. Preparing to celebrate the third year of his foundation, My Name’5 Doddie, and four years of living with MND there are many reasons to rejoice for Doddie as he continues to battle a condition with a very limited life expectancy.
“The only people I think are upset about being three years in are my trustees, because they thought they were only signing up for six months,” laughs Doddie. “Here we are, still living after all these years and hopefully we’ll get a couple more in as well.”
To date, My Name’5 Doddie Foundation has helped to raise £5million in funding for people living with MND, their loved ones and the professionals working to find a cure.
Doddie continues: “It makes me very humble to see what people have been doing behind the scenes. At the charity we’ve had major success, not because of me, but because of the hundreds and thousands of people supporting behind the scenes.”
The vast majority of funding raised by Doddie’s foundation is invested into MND research, and, despite lockdown, 2020 looks to be a significant year in terms of MND support.
In a landmark movement to find a cure for MND 2020 saw the start of clinical trials, the first of their kind in the history of MND research.
Doddie enthuses: “This year was going to be a fantastic year, there were two to four trials set to be starting in January, which gives everyone with MND that little glimmer of hope.” Unfortunately, the pandemic halted the trials until June.
“I’ve had MND for nearly four years and I’m very fortunate to be eating, drinking, talking and walking, some are not that fortunate,” explains Doddie.
“We’re a long time behind cancer, but we’re finally there that people with MND have a chance and you never know, one of these trials might work in slowing down the disease.”
At present there is only one drug that can help people with MND, however this only improves life expectancy for several months.
“The only other drug I see is positivity. Positivity is the thing that drives me on and helps get me up in the morning, it could have a lot to do with my sporting background. My rugby game is against MND, my daily fight is with MND; and, during my career I didn’t like to give in too often,” laughs Doddie.
With trials now underway, Doddie still in relatively good health, and the foundation going strong, despite the hardships of 2020 and the coronavirus pandemic it looks to be that MND research is going in the right direction – but more can always be done.
Alongside Doddie, former rugby player Rob Burrow was diagnosed with MND in 2019, just two years after ending his playing career.
Rob commented: “First it comes for your voice. Then it takes your legs. It tries to rob you of your breath. But it can’t sap your spirit.”
Appearing in a BBC Breakfast documentary, Rob Burrow: My Year With MND, the show followed Rob and his young family from diagnosis and campaigning to raise awareness.
Similarly, a young Glasgow veteran Stuart Carmichael has revealed his battle with MND for the last two years and his wish to see his children grow up.
Doddie, Rob and Stuart all have similar goals and reasons to fight: to spend more time with their families and find a cure.
Although heart-wrenching to see more people opening up about their experiences, the increased awareness of the condition will encourage further education, which is imperative to find a cure.
“It is such a horrific disease, it affects the whole family,” emphasises Doddie.
“The big thing for me is to try and get the word out to our MND patients to say that there is a lot going on behind the scenes, because it’s such a complicated issue don’t give in.”
Alongside members of the foundation, just before lockdown Doddie started a podcast – The Dodcast – which covered a range of topics including interviews with researchers in the field.
Doddie explains: “Up until now there was very little, if any, information available to MND patients. People still go online to self-cure; I’m trying to reach out to a few people to try and let patients know what is going on. People are sitting at home thinking they’re doomed.
“The foundation is trying to let people know that there is hard work going on behind the scenes, and we’re slowly getting there with The Dodcast.”
In one episode, Doddie is joined by Jill Douglas, the foundations CEO, Sean McGrath, medical strategy lead for the foundation, and Professor Ammar Al-Chalabi of King’s College London to discuss clinical trials underway for MND.
Doddie says: “At the moment I don’t think there is enough information being passed out. We need to try and educate everyone about what is and isn’t good for you.
“I feel The Dodcast helps in that way, and gives people the chance to email in and ask Ammar questions, and I’m hoping when I’m on The Dodcast that I ask the questions that listeners would quite like to hear an answer to.”