With MND Association
Rugby legend Rob Burrow and former footballer Stephen Darby take call for research funding to No 10
Rugby legend Rob Burrow and former Liverpool footballer Stephen Darby, along with other people who, like them, are living with motor neurone disease, took their call for Government funding of targeted motor neurone disease research direct to Number 10.
The sportsmen delivered a letter, signed by hundreds of people with MND, to Downing Street urging the Government to inject £50 million into targeted MND research over the next five years. They were joined by former West Midlands Police Assistant Chief Constable Chris Johnson, Nicola Waters and Emma Moss, both leading figures in the campaigning coalition United To End MND.
The letter https://patientsunited2endmnd.org/ stated:
MND is a death sentence. Each of us will lose the ability to walk, use our arms and hands, speak, eat and ultimately breathe. Most of us will become completely paralysed and trapped in our own bodies. We will all die of the disease because there are no treatments to help us.
However, research has now reached a point where a cure or life-saving treatments can be found. The current piecemeal and protracted approach of funding individual projects will not deliver the life-saving treatments we need. We urgently appeal for action and investment now.
The delegation started the day meeting MPs in Parliament before heading to Downing Street.
Among the group should have been former Scotland rugby giant Doddie Weir OBE, who is also living with MND. After starting the journey to Downing Street, Doddie received a notification that he and his wife Kathy have been in close contact with someone with Covid-19 and as such made the decision to return home to protect those around him.
The funding call being taken to the top of the Government is led by the MND Association, MND Scotland, My Name’5 Doddie Foundation, neurologists and people with the disease.
The funding bid has already been debated in Parliament after a petition to garner public support gathered more than 100,000 signatures in just three weeks. Members of the coalition have met with key politicians to explain the desperate need for the cash, to shore up the investment made by charities and industry.
Stephen Darby said:
“After all of the hard work that has gone into the campaign it felt massively important to be here representing every family that has gone through MND. It’d mean everything to me to get the investment needed. UK researchers are doing amazing things with little funding and this boost would help to speed things up and give families the hope they need.”
Professor Ammar Al-Chalabi, Consultant Neurologist at Kings College London said:
“It’s incredibly moving to see so many people here today in support of MND research. It is humbling how everyone is uniting to support myself and the research community, so that we can make strides to finding a cure for MND.”
Chris Johnson, former Assistant Chief Constable at West Midlands Police, who is living with MND said:
“I’m very proud to be representing people who are living with the disease and their families. Being here today it feels like we are being listened to and we can see that there is a whole range of support. I want to challenge the Government to be brave and think differently about MND research. If they are prepared to do that, we could genuinely be on the cusp of something great. I was delighted to have the opportunity to drop in on my constituent Chris, the @mndassoc, @MNDScotland and @MNDoddie5 in Parliament today. Thank you for all the outstanding work you do. pic.twitter.com/l6Fh88HKRQ — Sajid Javid (@sajidjavid) September 21, 2021