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MND

Extra Mile Challenge more than doubles fundraising target

The 101-mile run in 24 hours to raise money for MND is Kevin Sinfield’s ‘toughest challenge yet’

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Rugby league legend and fundraising hero Kevin Sinfield has embarked on his Extra Mile Challenge to support people living with MND, and has already more than doubled his sponsorship target. 

After raising over £2.7million with his 7 in 7 Challenge – which saw Kevin completing seven marathons in as many days – to raise funds for the MND community in December 2020, he is now taking on his next ultra challenge. 

The challenge will see him attempt to run from the home of Leicester Tigers – the Premiership club where Kevin recently became part of the coaching staff – to Leeds Rhinos’ Headingley Stadium in just 24 hours. 

The hugely ambitious feat, inspired by Kevin’s friend and former Leeds team mate Rob Burrow, was planned to cover 100 miles – but the actual route totals 101 miles, with the extra mile giving the challenge its name, and the sentiment being he will always go the extra mile for his friend, who was diagnosed with MND in 2019. 

Kevin set off on his challenge this morning, with a target of raising £100,000 – already his total stands at more than total that amount, with more donations being received continually. 

Donations will be split equally between the Leeds Hospitals Charity appeal to build the Rob Burrow Centre for MND, supporting people living with MND and their families, and the MND Association, which funds multi-disciplinary care delivered at the centre and others across the country, as well as research into potential treatments for the disease.

“Undoubtedly, this will be the toughest challenge I have ever attempted, but I know it will mean so much to so many people if we meet our fundraising target,” said Kevin. 

“I am sure there will be tough times as we pound the streets during the day and night, in cold November temperatures, but knowing the good we can achieve together will be a huge motivation for all involved.” 

While COVID-19 restrictions meant crowds could not gather to support Kevin as he completed his 7 in 7 Challenge in December last year, many people are expected to watch him en route to Leeds today and overnight. 

His timetable and route have been made available for anyone who wishes to show their support in person. 

To sponsor Kevin in his Extra Mile Challenge, visit here

MND

Breakthrough in understanding MND

The Trinity College Dublin research has been hailed as being “extremely valuable” with “enormous” implications

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An “extremely valuable” breakthrough has been made in understanding motor neurone disease (MND).

A research team from Trinity College Dublin has found that MND has four distinct patterns of changes in electrical signals that can be identified using EEG (electroencephalography).

The breakthrough has been hailed as being of huge value in identifying patients for clinical trials and will assist in finding new treatments for the neurodegenerative disease.

While trials of new drugs are being undertaken, MND is known to be very heterogeneous with different patterns of disability and life expectancy. 

Predicting in advance the pattern of disability and life expectancy is one of the major challenges in designing modern clinical trials, said the team. 

The electrical signal analysis research developed within Trinity College has discovered different patterns of brain network disruption reflect the underlying disease process. 

The Trinity researchers have now shown that these patterns of brain network disruptions in MND cluster into four distinct subtypes that are predictive of how the disease progresses. 

The team’s findings move the Trinity researchers one step closer to building better and more effective treatments for different sub-categories of the disease.

The work was performed by Stefan Dukic, a PhD student within the academic unit of neurology at Trinity, under the supervision of Dr Bahman Nasseroleslami, Fr Tony Coote assistant professor in neuroelectric signal analysis.Dr Nasseroleslami said: “Understanding how brain networking is disrupted in MND has been the focus of our research for the past ten years. 

“This work show that we are on the right track, and that the technologies we have developed to capture electrical activity in the brain can identify important differences between different patient groups.”

Professor Orla Hardiman, professor of neurology and regarded as a world leader in MND research, said: “This is a very important and exciting body of work. 

“A major barrier to providing the right drug for the right patient in MND is the heterogeneity of the disease. 

“This breakthrough research has shown that it is possible to use patterns of brain network dysfunction to identify subgroups of patients that cannot be distinguished by clinical examination.

“The implications of this work are enormous, as we will have new and reliable ways segregate patients based on what is really happening within the nervous system in MND.”

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MND

£375m for neurodegenerative diseases research

The award also includes £50m for dedicated research into MND

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Investment of £375million will be made over the next five years to fund research into neurodegenerative diseases, it has been announced. 

The commitment also includes at least £50million dedicated to research into motor neurone disease (MND) – a currently incurable condition that affects the brain and nerves and affects 5,000 people in the UK. 

Following a high-profile campaign led by the MND Association and Rob Burrow, MND Scotland and the My Name’5 Doddie Foundation, new and innovative projects will now be funded, to help advance understanding of the disease and its genetic transmission, develop and test treatments and improve care for those living with MND.

A new National Institute for Health Research (NIHR) Research Unit will also be set up to coordinate research applications for the new funding, encouraging more innovative studies with the ultimate goal of finding a cure.

There is currently only one drug licensed in the UK to treat MND – Riluzole – which slows the progression of the disease and can extend a person’s life by a few months. 

The new Government funding will now help to accelerate progress across the UK to find better treatments for MND, and give people living with the condition the chance of a better quality of life, and more good years with their loved ones.

“This investment is going to drive MND research forward towards treatments and cures,” says Sally Light, chief executive of the MND Association. 

“This is the hope we have been longing for. I want to thank every single person who has joined us in this campaign.”

As well as MND, the £375million investment will fund projects into neurodegenerative conditions including Pick’s Disease, Fronto-temporal dementia, wernicke-korsakoff, Parkinson’s disease dementia, Lewy Body dementia, Alzheimer’s disease and mild cognitive impairment.

Health and Social Care Secretary, Sajid Javid, said: “Neurodegenerative conditions like MND can have a devastating impact on people’s lives and I’m committed to ensuring the government does everything we can to fight these diseases and support those affected.

“We’ve already invested millions in understanding and treating MND and our new funding commitment will back more research into this and other neurodegenerative diseases.

“The UK is a global leader in medical research. Our world-class research sector was central to the discovery of lifesaving treatments for COVID-19 like dexamethasone and Tocilizumab, as well as the development of the vaccine programme which has saved hundreds of thousands of lives.

“We will continue to harness this expertise and innovation to support pioneering projects to find better treatments for those living with motor neurone disease, like the excellent work underway at NIHR Sheffield Biomedical Research Centre where scientists are trialling new drugs to treat the condition.”

The NIHR has committed to ongoing research into MND, reinforced by issuing a Highlight Notice inviting applications from ambitious research projects to take potential treatments from the lab to the clinic, as part of scaled-up efforts to significantly improve the care and support available.

The NIHR has also awarded a prestigious Research Professorship to leading motor neurone disease researcher Professor Chris McDermott. The award will focus on improving care for people with MND, bolstering leadership in this area of research, and strengthening the design of clinical trials to help more people with the disease take part.

While there is still work to be done, progress is being made, including through the development of better data resources such as MND Register and MND Biobanks which support researchers working to better understand the disease.

Improved data sets make it easier for scientists to monitor responses to treatment in clinical trials. 

And through innovative and flexible trial designs, researchers are able to conduct faster and cheaper trials which will deliver potential new treatments to patients more quickly.

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MND

My Name’5 Doddie Foundation donates £250,000 to MND trial

Newcastle upon Tyne Hospitals NHS Foundation Trust receives funding to further its MND research

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An NHS Trust has received funding from the My Name’5 Doddie Foundation to explore whether some types of medications already used to treat other conditions could slow progression of motor neurone disease (MND).

The Newcastle upon Tyne Hospitals NHS Foundation Trust has been given £250,000 from the charity set up by retired international rugby player, Doddie Weir OBE, who was diagnosed with MND in 2017, to set up and run the MND-SMART clinical trial. 

Unlike typical clinical trials which test a single treatment at a time, MND-SMART will test multiple drugs and so aims to speed up the time it takes to find effective medicines that can slow the progression of MND.

A research co-ordinator post has also been created to oversee the day-to-day running of the trial, supported by funding from the charity.

Currently, there is only one drug licensed in the UK which slows disease progression and improves life expectancy for patients with MND by an average of two to three months. 

The average life expectancy for people diagnosed with MND is three years from when they first notice symptoms.

There are around 5,000 people with MND in the UK, a disease which affects the brain and motor nerves, and causes weakness that gets worse over time. There is, as yet, no cure and the disease eventually leads to death.

Dr Timothy Williams, consultant neurologist at Newcastle Hospitals and director of the Newcastle Motor Neurone Disease Care and Research Centre, said: “Motor neurone disease is hugely challenging for patients and their families. Although researchers have discovered much more about the disease in recent years, unfortunately there is currently no truly effective treatment or cure.

“This clinical trial will compare one of two trial drugs against a dummy drug and look for slowing of changes in patient’s respiratory (lung) function, quality of life and psychological factors, such as behaviour. We will also look to see if there is improved life expectancy.

“We are incredibly grateful to the My Name’5 Doddie Foundation for this funding and hope the trial leads to improved treatments and quality of life for patients with MND, while research continues to one day find a cure for the disease.”

Sean McGrath, medical strategy lead at the My Name’5 Doddie Foundation, said: “Funding promising research is our number one priority, and we are excited to be supporting this important clinical trial that gives people living with MND much-needed opportunities and hope. 

“We couldn’t do it without our amazing supporters, and are very grateful for all they continue to do in our shared drive to find meaningful treatments for MND.”

Professor Siddharthan Chandran, director of the Euan MacDonald Centre for Motor Neuron Disease Research at the University of Edinburgh and Chief Investigator of MND-SMART, added: “We are delighted that MND-SMART will be recruiting patients in Newcastle, and are extremely grateful to the My Name’5 Doddie Foundation for their pivotal support.”

MND-SMART has been developed by people with MND and clinical trial experts from across the UK. The study is led by the Euan MacDonald Centre for MND Research at the University of Edinburgh.

MND-SMART is funded by MND Scotland, Euan MacDonald Centre and the My Name’5 Doddie Foundation.

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