The Scottish Government is teaming up with MND Scotland to fund research to investigate potential causes of and therapies for motor neurone disease (MND).
Each partner is contributing £125,000 to provide the opportunity for a clinical professional to undertake a PhD to both enhance MND research and MND clinical capacity in NHS Scotland. The three-year Clinical Academic Fellowship will start in 2024.
According to MND Scotland, in the UK, there is a 1 in 300 lifetime risk of getting MND and there is currently no cure or effective disease modifying treatment available. Average life expectancy following diagnosis is just 18 months.
Deputy First Minister Shona Robison announced the funding in Paris where she welcomed charity cyclists who had travelled from Edinburgh to raise funds for the MND charity My Name’5 Doddie Foundation.
Ms Robison said: “MND is a devastating condition, and we are committed to ensuring that all people living with MND in Scotland are able to access the best possible care and support.
“MND is incredibly distressing for the person with the condition and their family. The research funding in collaboration with MND Scotland will allow vital work to study the progression of the condition and help inform the development of future treatments.”
Dr Jane Haley, Director of Research at MND Scotland, said: “We are proud of our ongoing partnership with the Scottish Government. This is our third joint funded fellowship and will further build MND research capacity within the NHS in Scotland.
“MND is a brutal disease that affects too many lives. With this joint funding, we are taking a further step towards understanding the causes of MND and the search for effective treatments.
“We look forward to future collaborations with the Scottish Government, including ensuring that Scotland is equipped to roll out any emerging treatments for MND which may arise from the clinical trials currently underway.”
Alice Gully and Kate Mactaggart, business women and mothers, both aged 46 from the Scottish Borders have been selected out of thousands of applicants to participate in the August 2022 Mongol Derby race.
Gully and Mactaggart (AKA Doddie’5 Dazzlers) are racing to raise £30,000 in aid of My Name’5 Doddie Foundation, set up by fellow Scot, Doddie Weir OBE. The Foundation is committed to helping improve the lives of those affected by Motor Neuron Disease.
With just 40 selected jockeys riding, this gruelling 1000km course takes up to 10 days and it is regarded as the longest and toughest horse race in the world. It is genuinely dangerous with a high chance of injury and typically only half the jockeys complete the race.
This is the greatest equine adventure in the world – high passes, huge valleys, wooded hills, river crossings, wetland, dunes and of course open steppe.
The jockeys live with the herders at night, eat local food (a diet of mutton and offal) and rely on their wits and skill during the day. Weather extremes are expected in the Mongol Derby with temperatures ranging from freezing to 38⁰C and anything from horizontal rain to scorching sun.
To prepare for this epic race, Alice and Kate are both currently undergoing an intense training and exercise regime, which includes cycling 100 miles and rowing 21,000 meters per week, as well as a weekly 5k run, 20,000 steps per day and over 7hrs in the saddle each week.
A huge commitment to undertake in addition to their businesses and family life, with 6 children between them!
In 1224 Genghis Khan set up the world’s first long-distance horse messenger system, which connected half of the planet.
Using a massive network of horse stations (‘morin urtuus’ in Mongolian) his hardy messengers could gallop from Kharkhorin to the Caspian Sea in a number of days.
Nearly 800 years later, for 10 days each August, the Mongol Derby recreates this legendary system, utilising a network of urtuus at 40km intervals along the entire 1000km course.
MND letter relays the country in bid for £50 million from UK Government
Doddie Weir OBE and Euan MacDonald MBE have kickstarted a nationwide ‘MND letter relay’ from Scotland to 10 Downing Street. The letter, which has already been signed by hundreds of motor neurone disease (MND) patients from across the country, calls for the UK Government to invest in MND research.
United to End MND – a campaign led by charities MND Scotland, the My Name’5 Doddie Foundation and MND Association, as well neurologists and people living with MND – calls for £50 million of UK Government funding over five years to target MND research.
To catapult the campaign, patients throughout the UK have now written and signed a personal letter to the Prime Minister Boris Johnson, which will be presented at 10 Downing Street on Tuesday 21st September, by rugby legends Doddie Weir and Rob Burrow.
Speaking to BBC Breakfast to launch activities on Thursday, Doddie said: “We are continuing to fight to try and make a difference, and to try and find a cure for this horrific issue of MND.The UK has the best researchers in the world and at the moment we’re nearly there to find a stoppage or a cure.
“So this letter, and the money from the Government, will make a massive difference. This will give a lot of hope to people with MND. We need to take it to the next level and with that we need the Government’s help.”
Before his departure to London, Doddie is leading the charge by sending the patient letter on a relay across the nation, to encourage more people living with MND to sign it, starting with fellow MND campaigner, Euan MacDonald in Edinburgh.
Euan, who has MND, is the co-founder of the Euan MacDonald Centre for MND Research. He was joined there by Dr Suvankar Pal, Consultant Neurologist from the University of Edinburgh and Rachel Maitland, MND Scotland’s Chief Executive, who are showing their support for the letter.
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’.
Euan said: “I very much believe the goal of finding treatments for MND is achievable. The letter and supporting statements highlight the personal impact this disease has had on families like mine and others up and down the country.
“We are trying to ensure other people’s children, spouses, parents and siblings don’t have to go through what ours have. I’d like to appeal to the Prime Minister to back MND patients and have confidence in UK Science achieving what may have previously seemed impossible – a cure for MND.”
Currently the UK Government’s funding for targeted MND research stands at less than £5 million a year, which the campaign 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 campaign coalition have met with key politicians to explain the desperate need for the cash, to shore up the investment made by charities and industry.
With the support of MND charities and neurologists, campaigners are now taking the call directly to Downing Street and people living with MND still have the opportunity to add their signature here: patientsunited2endmnd.org.
Dr Suvankar Pal, the Co-Lead Investigator of MND-SMART, the UK’s biggest drug trial for MND, said: “This is an exciting time for MND research with many centres across the UK working on important areas ranging from drug discovery to delivery of treatment trials.
“We fully support this initiative which promotes collaborative working and much needed investment in research with the aim of delivering new treatments for MND in a timely way.”
Rachel Maitland, MND Scotland’s Chief Executive, said: “We are united here today 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 Doddie and Euan do not have time to wait, and neither does our search for a cure.
“MND Scotland’s vision is a world without MND. But we are only able to fund the pioneering research taking place at the Euan MacDonald Centre, and other institutes 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 cannot do it without the UK Government’s support.”
To find out more about the campaign visit www.mndscotland.org.uk/united or tweet your support @MNDScotland @MNDAssoc and @MNDoddie5 using #United2EndMND.
Gregor Miller, a Scottish Ambulance Service technician based in Glenrothes, has organised a charity run from Stirling Castle to Tynecastle to raise awareness of Motor Neuron Disease (MND) after losing his dad, Campbell, to the disease.
Gregor has a host of celebrities backing his event, including Scott Hastings, Grant Stott, Gary Naysmith, Kevin Kyle, and Michael Stewart, among a host of others. You can see the messages at Castle Crusade Run
So far, Gregor has raised £7,631.32 of his £10,000 target. Visit bit.ly/2PyoRyJ to help the cause, with money going towards My Name’5 Doddie foundation, MND Scotland and the Euan Macdonald Centre.
Gregor said: “The support I have received is incredible which can be seen on our Facebook page.
“I’m looking forward to running with the different celebrities at the various check points to pull me on as running alone is very lonely and the strength to keep you going mentally is enormous. I keep remembering why I’m doing the challenge and the lives that will be helped by the research funding raised.
“Please can I ask as many people to follow and share the Castle Crusade Run on all social media platforms and most of all donate to support The Doddie Weir Foundation, The Euan MacDonald Centre and MND Scotland.”
Joining the Crusade for the run are Ryan Stevenson (Hearts FC), Colin Cameron (Hearts & Scotland), Simon Ramsden (Motherwell), Tam McManus (Hibernian), Willie Conquer (Referee) and Scott Hastings (Watsonians & Scotland Rugby Union).
The My Name’5 Doddie Foundation, founded by rugby legend Doddie Weir, has donated an additional £100,000 to MND Scotland and £200,000 to the MND Association of England Wales and Northern Ireland, to support people living with motor neurone disease (MND).
Doddie, who first shared his MND diagnosis in June 2017, has pledged to help others living with the rapidly progressing terminal illness, as well as funding for vital research into finding a cure.
To support families currently affected, the Foundation has committed annnual funding to MND Scotland and the MND Association, since 2018.
The Foundation also made one-off donations to the charities in response to the Covid-19 pandemic, taking its total contributions to MND Scotland and the MND Association to £380,000 and £670,000, respectively.
The new funds will be used by both charities to help families across the UK cover some of the financial burden that comes with a diagnosis of MND, through their grant programmes.
These programmes aim to help reduce some of the extra costs that come with living with MND. The grants can be used in various ways, for instance; to help with costs towards home adaptations, such as ramps and stairlifts, for specialist equipment to live life more independently, and for respite activities for carers and families.
Jill Douglas, CEO of the My Name’5 Doddie Foundation, said: “We are delighted to continue and further strengthen our relationships with MND Scotland and MND Association by working with both these charities to support people living with motor neuron disease.
“This commitment, by Doddie and the Foundation, to help patients and their families, is one of our main strategic goals and we look forward to sharing our plans for the future in the coming months.
“Our ability to offer grants to families, through the existing frontline care charities, is only possible through the amazing contribution of our fundraisers and supporters and we’d like to thank everyone who has helped and supported us, you inspire us every day!”
Adrian Murphy, MND Scotland’s Chair, said:“I’d like to thank the Foundation for its ongoing support of our grants programme which allows us to provide essential support to the families affected by this devastating disease.
“Since his own diagnosis, Doddie has raised an incredible amount of awareness by sharing his personal journey with MND, and through his Foundation has raised vital funds to support the cause. By continuing to work together we can help make life a little easier for people living with MND right now.”
Sally Light, Chief Executive of the MND Association for England, Wales and Northern Ireland, said:“We are really pleased and grateful that Doddie is channelling money raised by his Foundation in the last year into our care grants programme once again, ensuring it goes directly to people affected by MND who desperately need it.
“We have a long-standing and comprehensive programme which we know makes such a difference and support like Doddie’s and that of his Foundation’s supporters is vital to us continuing with that.”
MND Scotland has announced the launch of the first Motor Neurone Disease (MND) clinical drug trial in Scotland, in over 20 years. MND Scotland, who is part-funding the study in Glasgow, is committing over £1.5 million into MND drug trials in Scotland, with MIROCALS being the first investment. Continue reading First MND drug trial in twenty years comes to Scotland
