Brave Lanarkshire MND activist co-signs letter to Prime Minister calling for £ 50million in funding
An MND activist wrote to the Prime Minister to request funding for research into motor neuron diseases.
Natalie Rushton added her signature to the letter to Boris Johnson, which was also signed by hundreds of other people with motor neuron disease.
Tomorrow, rugby union legend Doddie Weir will be in London, where he will join others living with MND to deliver the letter straight to number 10.
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The letter reads: âThe MND is a death sentence. Each of us will lose the ability to walk, use our arms and hands, talk, eat, and ultimately breathe.
âMost of us will become completely paralyzed and trapped in our own bodies. We will all die from the disease because there is no treatment to help us. One third of us will die in a year and two thirds in two years.
âResearch has now reached a point where a cure or life-saving treatments can be found.
âWe urgently call to act and invest now. “
Natalie, 21, is among those who have put their name literally.
Natalie, who was a competitive dancer before her diagnosis, told Lanarkshire Live: âI signed this patient letter to the Prime Minister because I believe more funds are needed to fund this research program.
âIt is important to me because I am only 21 years old and I live with this fatal disease. I hope this research means that a drug can be found to stop the progression of my symptoms but can also find a cure for this disease, which would allow all of us to have some sort of normal life without it being appropriate. of all the hospital appointments and endless days of discomfort or pain.
âHaving this disease has changed my life in many ways. One of the things that has changed mentally the most for me is that I was a dancer and now I’m not able to do it anymore.
âI used to dance in cheer, pom and hip-hop from the age of seven, and later musical theater at age 16, which involved competitions at Disneyland Paris, everything by continuing to practice ballet, tap dancing, modern, disco and majorettes. “
The MND patients who signed 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, as well as neurologists.
Currently, UK government funding for targeted MND research amounts to less than Â£ 5million per year, which the coalition says is not enough.
Â£ 50million from the UK government over five years would fund a virtual institute for MND research, providing the infrastructure needed to speed up treatments for MND.
Natalie added: âIt is important to find a cure for this horrible disease where it stops the progression or cures us completely.
“If there was a cure to make it go away completely, it would allow me to get back to my old life and be a normal 21 year old. On the other hand, if there is a cure to stop the deterioration of my body, that would allow me to accept the stage I am in and not worry if I will get worse in a month, six months, a year or even five years because it is an unpredictable fatal disease.
âTo the Prime Minister, please help us! Without this funding, we will never be able to obtain any cure. This funding would allow us to fight the disease in the hope that it will not kill us until a cure is found.
Rachel Maitland, Managing Director of MND Scotland, said: âWe are leading this campaign to ensure that the voices of people living with MND are heard by the UK government. The average life expectancy of a person with MND is only 18 months from diagnosis.
âWe can only fund pioneering research in Scotland and across the UK through the generosity of our supporters. The MND is not incurable, it is just underfunded. Together we will beat MND, but we cannot do it without the support of the UK government. “
To learn more about the campaign, visit www.mndscotland.org.uk/united or tweet your support @MNDScotland @MNDAssoc and @ MNDoddie5 using # United2EndMND.
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