THE JOURNEY TO IMPROVE LIVES
IT WAS four months ago that the Sunday Express launched a campaign calling for £50million of Government funding for targeted research to find a cure for motor neurone disease.
Our Fund The Fight To Cure MND crusade added our voice to a coalition of charities already battling for Chancellor Rishi Sunak to come up with the cash in last month’s public spending review.
The United To End MND campaign being run by the MND Association, MND Scotland and My Name’5 Doddie Foundation had called for the funding over five years to set up an MND research institute.
It would co-ordinate promising research being carried out by separate groups across the UK.
The Government said it had spent £54million in the past five years on tackling the brutal disease, which attacks the nerves that control movement so muscles no longer work.
But campaigners said most of that funding had gone towards general neurological research, rather than targeted studies, which they argued received less than £5million a year.
Leading neurologists said doubling this amount under the organisation of a virtual institute would mean effective treatments, and a cure, could be found in five to 10 years, as opposed to decades, giving hope to thousands living with MND.
For the second week of our crusade, Good Morning Britain presenter Charlotte Hawkins movingly wrote about her own experience of her father Frank’s diagnosis with the disease, saying it “broke my heart, there was nothing we could do”.
Alongside this Sajid Javid, who had been appointed Health Secretary following the shock resignation of
Matt Hancock, insisted that tackling MND was a priority for him.
He said: “Motor neurone disease is a debilitating condition and I’m committed to doing all we can to fight this disease.”
High-profile people living with MND – including former footballers Stephen Darby and Len Johnrose – spoke about its effect as they added their weight to our campaign.
They were joined by Jo Knowlton, from Dundee, who was diagnosed aged just 29 while focusing on her career in police forensics, which agonisingly deprived her of the chance to start a family.
Another leading campaigner, Cris Hoskins, movingly spoke about losing six members of her family, including both her sons, to an inherited form of MND.
And Ian Muir highlighted the lonely plight of carers. After bringing up two sons and running a business together, Ian and his wife Cath were looking forward to enjoying a long and happy retirement. But their
‘I’m committed to
doing all we can’
dreams were shattered when Cath was diagnosed with the disease, compelling Ian to become her full-time carer.
Ian, 64, said: “I felt it was something I had to do. If it was the other way around hopefully Cath would have done the same for me.
“I was not trained for this so it is obviously very demanding.
“It can be quite lonely and, for want of a better expression, there is no escape from it – it’s a 24/7 job.”
And BBC Breakfast presenter Sally Nugent described how honoured she had been to tell the story of a family coping with the effects of the terminal disease in a documentary about the day-to-day life of rugby league great Rob Burrow.
To mark the two-month anniversary of our crusade, former Leeds Rhinos and Great Britain star Rob, 39, joined his friends, rugby union great Doddie Weir and Stephen Darby in calling for the Government to provide the £50million funding in the October spending review. They were among hundreds of MND patients to sign a letter urging Mr Javid and Mr Sunak to listen to their “loud and clear” message, which was delivered to No 10 Downing Street by Rob, Stephen, former Assistant Commissioner of West Midlands Police Chris Johnson and leading campaigners Nicola Waters and Emma Moss.
But patients, carers, campaigners and scientists were left “devastated” when the extra funding for targeted research to find a cure was not included in the spending review.
Despite this the Sunday Express vowed alongside the coalition of charities to maintain the fight for the money so urgently needed.
To maintain pressure on the Government, actor Gina Bellman last week spoke about her mother Helen’s 17-year struggle with a slowly progressing form of the disease.
She said she had struggled with going to check-ups with her mum because of the lack of treatment options, adding: “It’s something the Government needs to be aware of – it’s soul-destroying for someone with such a degenerative disease to have nothing offered to them.”
In the last week, a letter signed by Jill Douglas, chief executive of the My Name’5 Doddie Foundation, Chris James, the director of external affairs at the MND Association, and Professor Ammar Al-chalabi, professor of neurology and complex disease genetics at King’s College London, was sent to the Health Secretary.
In it they asked Mr Javid to update them on the battle for funds, saying: “We were heartened by your interest in the plight of MND patients and the strength of our submission.”
‘This disease is soul-destroying’