Motor Neurone Disease: Expert on early signs and symptoms
A delegation led by rugby league icon Rob Burrow and former footballer Stephen Darby delivered a 50-page letter signed by hundreds of MND patients to No10 Downing Street last week. The letter called for £50million funding over five years to set up a MND Research Institute to co-ordinate and accelerate efforts to find effective treatments for the rapidly progressing terminal disease. The Sunday Express has been campaigning for targeted funding for research alongside leading MND patients, charities and neurologists.
Former Scotland and British Lions rugby union star Doddie had been travelling south from his home in the Scottish Borders to join the delegation in Westminster when he was pinged as a close contact of someone testing positive for Covid-19. Reluctantly he returned home to start his isolation.
The Downing Street delegation also included former Assistant Chief Constable of West Midlands Police Chris Johnson and campaigners Nicola Waters and Emma Moss.
Doddie, 51, said: “I was really disappointed not to be in Westminster delivering the patient letter, but was so proud to see good friends Rob and Stephen do the honours, together with Emma, Nicola and Chris who are battling this brutal disease like me.
“I needed to take the responsible approach and reluctantly stay behind. I was there in spirit though.
“The awareness raised from these warriors making the trip to Downing Street and the incredible support we’ve had makes me feel like we are making real progress.
“I hope the Government hears our message loud and clear: MND is not a lost cause. It deserves more focus, more funding and a targeted research programme.
“We need to help our brilliant scientists find the treatments that are in our grasp, and give hope to people like me.
“To get to this next level we need the Government’s help now – we can’t lose any more time.”
Delivering their message to No 10, from left, were Emma Moss with husband Terry
Health and Social Care Secretary, Sajid Javid, said: “MND is a debilitating condition and I understand how hard it is for people and families living with it. I’m committed to doing all we can to fight this disease and support those living with it, which is why we are funding research and throwing our full weight behind pioneering projects to find better treatments.
“I want to thank the Sunday Express and its readers for their campaigning on this important issue.
“The National Institute for Health Research has invested over £10million into MND initiatives in the last five years. I encourage researchers in this area to apply for funding – your innovation is crucial and together we can do more to people living with this condition.”
After delivering the letter, former Great Britain and Leeds Rhinos star Rob, 38, said: “What this will give to MND sufferers is great hope. We are on the brink of a meaningful treatment so we need to get funds to prolong life and let us find a cure.”
Dad Geoff, who accompanied him to the doors of the Prime Minister’s residence, added: “I never thought myself and Rob would be outside 10 Downing Street. Let’s hope the petition makes a difference.”
Stephen, 32, who was a right-back for Liverpool, Bradford City and Bolton Wanderers, said: “Although it was a special day I am hopeful it is the start of things to come. The research in the UK is amazing, but it needs more help from government.”
Rugby star Doddie was unable to make trip to No 10 due to Covid ‘ping’
Mum-of-two Nicola, a leading campaigner since being diagnosed two years ago, said handing over the letter, which also contained personal messages about living with the disease, was “quite emotional”.
She said: “Some of the messages from the hundreds of people across the country are heartbreaking. We really must act now.”
Former police chief Chris, 53, a father-of-two, added: “The creation of a virtual MND Research Institute would provide the possibility of transforming research being undertaken across the country. We have got some fantastic scientists who are all proposing to come together to make a difference. It’s great news and offers real hope for those that have got MND, and also those yet to be diagnosed with it. I am hopeful this letter will make a difference.”
The final member of the delegation was mother-of-one Emma Moss, 40, who blogs as Mummy with MND.
She said: “To be here means everything as it feels like we are beginning to be listened to and heard.
“It is time for MND to be cured. We need to put an end to it so people like me and the 200,000 people alive today that will get it – and as it stands die from it – have better options, have some kind of treatment.
“To be told aged 37 that you are terminally ill and then to be told in the next breath that there is no treatment and no cure is ludicrous. We have the ability to cure this – all we need is the money.”
Dave Setters, another leading campaigner, said: “To see everyone going into Downing Street was a big moment.
“We really hope this will bring focus on the fact that we need funding for targeted research, not just background neurological research, so we can get all these things that come out of laboratories into proper testing quickly. With that we will get there in years and not decades.”
Professor Ammar Al-Chalabi, director of the MND Care and Research Centre at King’s College London, said: “MND will kill one in every 300 people, so it is essential that we find a cure and targeted funding will really help with that.”
Sports broadcaster Jill Douglas, chief executive of the My Name’5 Doddie Foundation, added: “It is fantastic that we are finally grabbing people’s attention and getting some cut through.”
She added: “We have a very clear message – we just need more targeted funding for MND research. There is a real swell of feeling among the MND community that we need to do things differently.
“We have done things the same way and got the same results, so we need this real injection of funding which will lead to real change and real breakthroughs.”
Andrew Lewer MP, chair of the All-Party Parliamentary Group on MND, said the campaign had “grabbed everyone’s attention” and he will keep pressing the Govern-ment for more targeted funding in the run-up to next month’s public spending review.
He said: “It’s important now because there have been so many interesting genetic breakthroughs recently, so it’s not just a bid for more money.
“Now we can actually point to clear breakthroughs in research that need that extra money to take us through to something which a few years ago seemed impossible – working towards a cure for MND.”