Sports stars lead campaign urging PM to find cure for ‘horrific’ disease


Motor neuron disease: expert in 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 funding of £ 50million over five years to create an MND research institute to coordinate and accelerate efforts to find effective treatments for the rapidly progressing terminal disease. The Sunday Express campaigned for targeted research funding alongside leading MND patients, charities and neurologists.

Former Scottish and British Lions rugby union star Doddie had traveled south from his home in the Scottish Borders to join the delegation in Westminster when he was contacted as close contact with someone who tested positive for Covid-19. Reluctantly, he returned home to begin his isolation.

The Downing Street delegation also included former West Midlands Police Deputy Chief Constable Chris Johnson and activists Nicola Waters and Emma Moss.

Doddie, 51, said: ‘I was really disappointed that I wasn’t in Westminster to deliver the patient’s letter, but I was so proud to see good friends Rob and Stephen doing the honors, along with Emma, Nicola and Chris who struggle with this brutal disease like me.

“I had to take a responsible approach and stay reluctant. I was there in spirit though.

“The awareness of these warriors who made the trip to Downing Street and the incredible support we have had makes me feel like we are making real progress.

“I hope the government will hear our message loud and clear: the MND is not a lost cause. It deserves more attention, more funding and a focused research agenda.

“We need to help our brilliant scientists find the treatments within our reach and give hope to people like me.

“To reach this next level, we need the help of the government now – we can’t waste any more time.”

Emma Moss and her husband Terry delivered their message to # 10, left to right. (Photo: Jonathan Buckmaster)

Health and Social Affairs Secretary Sajid Javid said: “MND is a debilitating disease and I understand how difficult it is for the individuals and families who live with it. I am committed to doing everything possible to fight this disease and support those who have it, which is why we are funding research and putting all our weight into pioneering projects to find better treatments.

“I would like to thank The Sunday Express and its readers for their campaign on this important issue.

“The National Institute for Health Research has invested over £ 10million in MND initiatives over the past five years. I encourage researchers in this area to apply for funding – your innovation is crucial and together we can do more for people living with this disease.

After delivering the letter, former UK and Leeds Rhinos star Rob, 38, said: “What this will give people with MND is great hope. We are on the verge of treatment. significant, so we need to secure funds to extend life and enable us to find a cure. ”

Papa Geoff, who accompanied him to the gates of the Prime Minister’s residence, added: “I never thought that me and Rob would be outside 10 Downing Street. Let’s do I hope the petition will make a difference.

Stephen, 32, who was a right-back for Liverpool, Bradford City and Bolton Wanderers, said: “Even though it was a special day, I hope it’s the start of things to come. The research in the UK is amazing, but it needs more help from the government. “


Rugby star Doddie couldn’t make it to No 10 due to Covid ‘ping’ (Image: Collect)

Mum-of-two Nicola, a leading activist since being diagnosed two years ago, said the delivery of the letter, which also contained personal messages about living with the disease, was “quite moving “.

She said: “Some of the messages from hundreds of people across the country are heartbreaking. We really need to act now.

Former police chief Chris, 53, a father of two, added: “The creation of a virtual MND research institute would provide the opportunity to transform research being undertaken across the country. We have amazing scientists who are all volunteering to come together to make a difference. This is great news and offers real hope for those with ND, and also for those who have not yet been diagnosed. I hope this letter will make a difference.

The latest member of the delegation was mother-of-one Emma Moss, 40, who blogs as Mum with MND.

She said: “Being here means everything because it feels like we are starting to be listened to and heard.

“It is time for MND to be healed. We have to put an end to it so that people like me and the 200,000 people alive today who suffer from it – and as it is now dying – have better options, have some sort of processing.

“Being told at 37 that you are terminally ill and then being told the next breath that there is no cure or cure is ridiculous. We have the capacity to fix that – all we need is money. “

Dave Setters, another prominent activist, said: “Seeing everyone walk into Downing Street was a big moment.

“We really hope this will highlight the fact that we need funding for targeted research, not just for substantive neurological research, so that we can quickly get all this stuff that comes out of the labs properly tested. With this, we will get there in years, not decades.

Professor Ammar Al-Chalabi, director of the MND Care and Research Center at King’s College London, said: “The MND will kill one in 300 people, so it is essential that we find a cure and targeted funding will really help.

Sports presenter Jill Douglas, Executive Director of the My Name’5 Doddie Foundation, added: “It’s fantastic that we are finally getting people’s attention and making our voices heard.”

She added: “We have a very clear message: we just need more targeted funding for MND research. There is a real feeling within the MND community that we need to do things differently.

“We’ve done it the same way and got the same results, so we need this real infusion of funding that will lead to real change and real breakthroughs.”

MP Andrew Lewer, chair of the all-party parliamentary group on the MND, said the campaign had “caught everyone’s attention” and it will continue to press the government for more targeted funding ahead of next month’s public expenditure review.

He said, “It’s important now because there have been so many interesting genetic breakthroughs recently, so it’s not just an offer for more money.

“Now we can actually point to clear breakthroughs in research that need this extra money to get us to something that seemed impossible a few years ago – working towards a cure for MND.”

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