Open Letter to the UK Government delivered September 21st 2021

Please see below our letter to the UK Government that was delivered on September 21st at 3pm to No.10 Downing Street.

We are a group of patients living with motor neurone disease.  We are calling for more investment and concerted action to find a cure or life-saving treatment for this horrific disease.

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.  One-third of us will die within a year, and two-thirds within two years.  And MND is not rare – it will kill 1 in 300 people or 200,000 of the current population. 

However, research has now reached a point where a cure or life-saving treatments can be found.  This is thanks largely to the work of charities and donations from the public.  The UK Government does invest but at a level of less than £5m a year (not counting research into neurodegenerative disease more generally, which is of little help to terminally ill MND patients).  This is insufficient for a disease of this nature. 

World leading UK scientists propose co-ordinated action across all UK MND research centres to establish a virtual MND Translational Research Institute to accelerate the delivery of life-saving treatments, at a cost of £50m over 5 years.  A detailed plan has been submitted to the Government, which will also establish the UK as a leader in this area of research and forge the way to discoveries in related diseases such as dementia.  The current piecemeal and protracted approach of funding individual projects will not deliver the life-saving treatments we need.  We patients fully support our scientists and charities.

Covid has shown what can be done where there is a will and sufficient investment.  MND patients are fed up with being told that it will be many years until life-saving treatments can be developed – we believe that they can be delivered much sooner.  How many more people will die a horrific death before we push for change?  How many more families will be traumatised at watching their loved ones go through such an ordeal?  Many of us may not survive long enough to benefit but we want to prevent the suffering of future patients: 200,000 of the current population.   

We urgently appeal for action and investment now.  

Chris, 54, father of a son and daughter aged 11 and 16, senior police officer, Bromsgrove.

Lee, 58, married father of one son, forced to stop adored career early along with his wife, Sussex.

Emma, 40, mother of a 4-year-old daughter, deputy headmistress, Northants.

David, 64, father and grandfather, publisher/events manager, Surrey.

Nicola, 47, mother of two sons aged 9 & 6, Essex.

#United2EndMND

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