‘I’m devastated...’ Funding setback for £50m MND research institute
LEADING voices in the fight against motor neurone disease have expressed anger and dismay at the Government’s decision not to provide the funding needed to find a cure for the condition.
The Sunday Express has been campaigning with charities, including the MND Association, MND Scotland and My Name’5 Doddie Foundation, for £50million from Whitehall coffers over five years for a “game-changing” research institute.
This would allow the work of scientists across the UK to be co-ordinated at a national level to accelerate finding effective treatments for a terminal disease that leaves sufferers locked in failing bodies.
Top neurologists are confident a virtual institute could achieve breakthroughs within five to 10 years, rather than decades.
But this funding was not included in the public spending review announced by Chancellor Rishi Sunak last week with his Budget. Rugby league great Rob Burrow
‘It feels like I’m meant to wait patiently to die’
said: “I am devastated by the news. As I have said before, MND is the forgotten disease, a disease nobody cares about.
“We will have to hope that other countries advance for a suitable treatment because this country has only licensed one clinical drug in over 30 years – a drug which has minimal effect on the disease process and life expectancy.”
The father of three, 39, who played for Leeds Rhinos and Great Britain, added: “MND affects one in 300 people and its diagnosis carries a death warrant.
“I am absolutely gutted that this Government does not think this is a priority. That is really sad.
“I challenge any member of Government to spend a day looking after a sufferer and experience first hand the devastating effects of this disease. Maybe then they would reconsider if this is a priority or not.”
Former footballer Stephen Darby was diagnosed with MND aged 29. He said: “I am disappointed and angry that the Government has not supported the campaign. For years now, families have seen their loved ones suffer from this brutal disease. The Government had a chance to change this but chose not to.”
The Liverpool, Bradford and Bolton defender, 33, added: “Although this is a major setback, it is important that we channel this disappointment and anger in a positive way, and continue to fight for every person and family hurt by MND, and continue to push for more funding.”
Jo Knowlton, 31, from Dundee, who was diagnosed with MND two years ago, said: “I’m heartbroken. The funding offered a glimmer of hope. It feels like the day I got my diagnosis all over again. Like I’m supposed to sit at home and wait patiently to die. I’m only 31 and it makes me feel like myself and everyone living with MND are not important enough.”
She added: “If the Government felt that the amount requested was unachievable, at least come back with a
counter-offer. Show us that you are dedicated to helping find treatments for this devastating disease. Show us that we matter.”
Emma Moss, 40, from Northampton, who blogs as Mummy With MND, said: “Can the Government provide any reasonable excuse for not wanting to accelerate research into a terminal illness that kills thousands of UK citizens every year?
“Current targeted funding is very poor and the outcome bleak for hundreds of thousands more people.”
She added: “My four-year-old daughter doesn’t yet know her mummy is dying.who would like to tell her because it isn’t something that I am prepared to do. Give us increased funding. Give us a chance to live.”
Fellow sufferer Nicola Waters, 47, said: “We need actions, not words, from the Government. All we are asking for is £10million a year.
“There are many young parents who face having to leave their children in the most distressing way. This is unacceptable when a cure is within reach.”
Cris Hoskin, 70, from Wigan, has lost six family members to an inherited form of MND, including her two sons.
She said: “I am bitterly disappointed. I feel the passionate pleas for this funding from people suffering from MND, their families and carers, as well as those who have lost family and friends, have been ignored.”
She added: “From my own personal perspective I feel that there has been no alleviation from the agony that I and my family have suffered over many years.
“Having already lost six family members I have to tell future generations of my family that this decision will impact on all our hopes for a cure in the near future.”
But another leading campaigner David Setters, who has MND, was more positive,
saying: “Not having our spending review submission accepted is bitterly disappointing. However, meaningful discussions with the Government continue. There are signs that ministers and advisers are beginning to understand that MND research is not only severely underfunded but also not directly targeted at this brutal disease.
“I can only hope that when they properly grasp this issue, they will provide us with the funds we need to bring hope to families living with MND across the country.”
Sports broadcaster Jill Douglas, the chief executive of My Name’5 Doddie Foundation, said: “After encouraging conversations with Government ministers and officials, we are obviously disappointed.
“We have all worked so hard in recent months to demonstrate how a research institute could deliver. Sadly, our voices have not been heard. But we are determined, as a foundation and as a coalition, to press ahead and continue to ensure that vital research is funded.”
Professor Ammar Al-chalabi, director of the MND Care and Research Centre at King’s College London, said: “The UK has
‘Who will tell my little girl Mummy is dying?’
some of the world’s top researchers trying to find a cure and will continue to work with Government and funding bodies to maintain our world-leading position. But they need co-ordinated funding. Our coalition will keep fighting for a UK research institute to accelerate the search for a cure.”
Rachel Maitland, MND Scotland’s chief executive, described last week’s decision as extremely disappointing.
She added: “We have made incredible strides in research over the past few years and now almost every person in Scotland has access to a clinical drug trial.
“This additional investment from the Government would have accelerated our progress. With over 450 people living with MND in Scotland today, around 200 will die within the next year. MND does not wait, and neither can we. MND Scotland will continue to fundraise and to fight for further investment into ground-breaking research. Together, we will beat MND.”