“Please help us!” 21-year-old with MND pleas to Prime Minister

Natalie Rushton, from East Kilbride, is one of the people living with MND who is urging the UK Government to invest £50 million over five years into targeted MND research.

A personal letter signed by hundreds of people with motor neurone disease (MND), which is calling for investment into targeted research, is on a journey across the country to Prime Minister Boris Johnson.

After posting the letter from his farm in the Scottish borders, rugby union legend Doddie Weir will head to London on Tuesday 21 September, to be joined by rugby league’s Rob Burrow and other people living with MND to deliver the letter directly to Number 10.

Between now and Tuesday, the letter is being passed around the nation in a bid for more signatures from people living with the disease. 

The letter states ‘MND is a death sentence’ but that ‘research has now reached a point where a cure or life-saving treatments can be found’. It continues ‘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 patients leading the letter are part of a coalition campaign – United To End MND – which includes MND Scotland, the My Name’5 Doddie Foundation and the MND Association, and neurologists.

Natalie, who diagnosed with MND in January, is one of those who has put their name to the letter.

The former professional dancer, said: “I have signed this patient letter to the Prime Minister because I think that more funding is required to go into this research programme.   

“This is important to me as I am only 21 years old and living with this deadly disease. I am hoping that this research means that a drug can be found to stop my symptoms progressing but may also find a cure for this disease, that would allow us all to have some sort of a normal life without it being about all hospital appointments and endless days of discomfort or pain.   

“Having this disease has changed my life in many ways. One of the most mentally changing things for me is that I was a dancer and now not able to do this. I used to dance in Cheer, Pom and Hip-Hop from the age of seven, and later on, musical theatre at 16, which involved competing in Disneyland Paris, while also continuing to practice ballet, tap, modern, disco and majorettes.

“Also not being a 21-year-old who can just go out with friends and do whatever we like is very difficult. I have to now plan each outing days in advance, for example, going out for drinks, dinner or shopping and have to rely on my friends pushing me in a wheelchair where the area is difficult or if I get tired, which is very frustrating.   

“It is important to find a cure for this horrible disease where it either stops progression or cures us completely. If there was a cure to make it completely disappear it would allow me to have my old life back and be a normal 21 year-old. On the other hand, if there is a cure to stop my body’s deterioration this would allow me to come to terms with the stage I am at and not worry if I am going to get worse within a month, 6 months, a year or even 5 years’ time, as it is such an unpredictable deadly disease.  

“To the Prime Minister, please help us! Without this funding we will never be able to get a cure of some sort. This funding would allow us to fight the disease with hope that it won’t kill us before a cure is found.” 

Currently the UK Government’s funding for targeted MND research stands at less than £5 million a year, which the coalition says is not enough. £50 million from the UK Government over five years would fund a virtual institute for MND Research, providing the infrastructure needed for accelerating treatments for MND.

The funding bid has already been debated in the UK 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.

Rachel Maitland, MND Scotland’s Chief Executive, said: “We are driving this campaign to ensure the voices of those living with MND are heard by the UK Government. The average life expectancy for someone with MND is just 18 months from diagnosis. People like Natalie do not have time to wait, and neither does our search for a cure.

“Over the past 40 years, MND Scotland has only been able to fund the pioneering research taking place in Scotland, and across the UK, because of the generosity of our supporters. MND isn’t incurable, it’s just under-funded. Together, we will beat MND, but we need the UK Government’s support to get there sooner.” 

If you have MND you can add your signature to the direct call for a £50million investment here or to find out more about the campaign visit www.mndscotland.org.uk/united.