Author Archives: onein300

A Statement

A Statement from Patients United 2 End MND

This is a statement from people living with MND. 

We are hopeful that discussions taking place today involving leading scientists and senior government advisers will open up a way to release the £50 million funding promised by the Prime Minister in November last year for a mission to find effective treatments for MND and enable the immediate rollout of the detailed and co-ordinated scientific research plan across the UK.

This meeting is a follow-up to our April 26 meeting with Gillian Keegan, Minister for Care and her staff.

Having raised the hopes of people suffering with one of the most devastating diseases, it would be an act of remarkable cruelty to dash those hopes at this stage. MND patients can see a way forward, led by the scientific community, and we are not going back to a position of accepting the status quo. We have found our voice and we will use it in the strongest ways until our scientists have the resources they need for their innovative mission to find treatments.

MND is unique in that there are no effective treatments and it has a near 100% fatality rate. It is so traumatic to endure that it is the most common reason people seek assisted death. We now have an opportunity to change this and we must grasp it. We trust the world-leading scientists here in the UK and we demand that the promised funds are released efficiently and promptly to them for their mission to end MND.

Patientsunited2endMND – 10/5/2022

#United2EndMND

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Update – 1st May 2022

Report of meeting with Care Minister Gillian Keegan

26th April

Representatives of the United2EndMND coalition (MND Association, MND Scotland, My Name’5 Doddie Foundation, researchers and patients) met with Gillian Keegan MP (minister for health and social care), Steve Baker MP, Andrew Lewer MBE MP and senior DHSC civil servants on 26 April in Parliament. The meeting was setup to push forward on the processes for applying for £50m pledged by the PM and SoS Sajid Javid in November 2021 for a new mission to fight MND.

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Single Application Letter from researchers

Letter to Minister ahead of Meeting on 26th April 2022

The UK government’s £50m wholly new commitment to a new MND Translational Research infrastructure is an amazing funding boost. But it can only fully realise the ambitions of the MND community and researchers with the streamlining of grant application processes.

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The best road to a cure – the importance of following the science

The best road to a cure – the importance of following the science

Following the news at the end of 2021 that the UK Government has committed an historic £50m over the next 5 years to targeted MND research, we thought it timely to reiterate the ground breaking research plans which underpinned our campaign.

Because of the ‘very targeted’ project aims we also feel it important to be very clear about what these specific funds will NOT be spent on.

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Threshold Funding

Bringing hope to MND patients – the changing status of research and how threshold funding will make a difference

Back in 2014, the now legendary Ice Bucket Challenge spread around the globe raising significant funds for the MND/ALS cause. In the UK alone about £7m was donated by our very generous public in just 2 short weeks during the warm summer weather.

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