Tag: MND Scotland

“Walk to Work for MND”

Alexander Middleton’s 90 Mile Challenge for MND Scotland

For some people the daily commute to work is a routine part of life. But for Alexander Middleton, a 32-year-old solicitor from Edinburgh, it became an opportunity to raise awareness and vital funds for a charity that supports individuals and families dealing with a motor neuron disease (MND) diagnosis.

Over the course of five days during September, Alexander walked from his home in South Queensferry to his office in Edinburgh. This was a round trip of approximately 18 miles each day with the aim of raising funds and awareness for Scotland’s motor neuron disease charity, MND Scotland.

Alexander is a lifelong rugby player and has seen the devastating impact of MND on figures like Doddie Weir, Rob Burrow, and Ed Slater. He wanted to take on the challenge to help raise funds for families in Scotland affected by the brutal disease.

Alexander said, “I’m young, I’m healthy, and while I can do it, I want to try and raise as much awareness as possible.

“I just feel for people that are suffering from it. If I can do something that helps them, then hopefully that’s me doing something good. For me, I see the challenge as short-term suffering- it’s nowhere near as challenging as MND. That’s what keeps me going”.

Each day, Alexander walked approximately five hours, starting at 5:30am and ending with another long trek home after a full day’s work.

Regardless of the weather, he kept going, driven by the thought of those who no longer have the ability to walk, let alone work: “I’m in a privileged position where I can do it. I can walk and I can speak to my partner. I’m not suffering from the disease.”

There are around 480 people in Scotland currently living with MND. On average almost 200 people are diagnosed each year in Scotland. The average life expectancy is just 18 months from diagnosis.

MND Scotland is the only charity dedicated to directly supporting people with MND, their families and friends across Scotland.

“Health is wealth. It’s opened my eyes to what’s important and not letting things bother you”, Alexander said.

The challenge became a community effort. Friends and family joined him on different parts of the walk, including his 64-year-old mum who trained to take part. Local businesses stepped up too – Rogue Bros in South Queensferry donated pizzas for the final day celebration, and nutrition brand ELEAT provided high-protein snacks to fuel Alexander’s challenge.

His passion doesn’t stop there. He’s already planning his next challenge for 2026. Alexander aims to organise a four-day run from Edinburgh to Newcastle, covering the distance of four marathons. He hopes to engage colleagues from both offices, raise even more funds, and continue building awareness around MND.

“I’d love for Walk to Work to become popular,” he said. “If people are inspired by my challenge and decide to do something themselves, that’s a bonus.”

Alexander believes that small actions can lead to big change. His efforts mirror the commitment of other MND champions like Kevin Sinfield, whose fundraising efforts have inspired thousands, including Alexander.

He added: “If someone’s inspired by my challenge, then that’s a bonus. You never know what’s around the corner, so go and do that holiday, or go and fundraise, do something silly, because you just never know what’s coming.”

Jonathan Mitchell, Head of Fundraising for MND Scotland, said: “We would like to thank Alexander for taking on his incredible “Walk to Work Challenge”.

“MND Scotland is supporting more people in Scotland who are facing MND – and the descent into the unknown – than ever before. The support from people like Alexander means that people in Scotland won’t have to face the unknown alone.

“Whether you decide to follow in Alexander’s ‘footsteps’ by encouraging your workplace to take on a walking challenge in support of MND Scotland or come up with a unique quirky idea of your own, everything you do will be helping to support people affected by MND in Scotland.”

Alexander’s “Walk to Work for MND,” has already surpassed his fundraising target and has raised over £3,800. If you would like to donate to his JustGiving page, please visit:

https://www.justgiving.com/page/alexander-middleton-1

“Until we find a cure, we need to keep banging the drum”, Alexander said.

For more information about MND Scotland, please visit: www.mndscotland.org.uk, email: info@mndscotland.org.uk, or call: 0141 332 3903.

One of Scotland’s largest private sports memorabilia collections to be auctioned for charity

John Horne marks 30 Years of business with landmark gesture

Sandy Young/scottishphotographer.com

In a powerful gesture of generosity, one of Scotland’s most passionate and prolific sports memorabilia collectors, is preparing to part with almost all of his decades-in-the-making collection in support of two charities close to his heart.

John Horne, Managing Director of JR Scaffold (Part of the JR Group), a leading construction and scaffolding firm celebrating its 30th anniversary this year, began collecting in 1995, the same year he launched his business.

What started as a few signed football shirts bought at charity auctions has evolved into one of the most extensive private collections of its kind in Scotland, featuring legendary names from across the globe.

To mark the company’s milestone year, John is auctioning more than 130 treasured items to raise vital funds for the Emmie Smillie Foundation and MND Scotland, causes with deeply personal meaning.

Among the highlights going under the hammer are signed shirts from Graeme Souness, Ronaldo, Jimmy Johnstone, Brian Laudrup, and Lionel Messi; iconic framed photos autographed by Diego Maradona, Peter Shilton, and George Best; and an array of rare boxing and golf memorabilia, including items signed by Muhammad Ali, Tiger Woods, and Masters champions.

The auction, organised by event specialists Blue Parrot Events Group through their Event PAL fundraising platform, will be hosted online and live for two weeks from Monday 30th June, giving fans and collectors the opportunity to own pieces of sporting history while supporting meaningful causes.

Sandy Young/scottishphotographer.com

John Horne, Managing Director of JR Scaffold, said: “This journey started with Old Firm memorabilia and a desire to support good causes. Over the years, I’ve been lucky to acquire pieces from some of the biggest names in sport.

“Every item holds a story, a moment, a memory, and while it’s emotional to part with them, this feels like the right time. Giving back has always been part of our company’s DNA, and this is my way of doing something personal to honour that as we hit 30 years.

“The auction will raise funds for the Emmie Smillie Foundation, a tribute to a wonderful young girl taken far too soon. Her dad, Andy Smillie, helped us start our company and our families remain close friends.

“We’re also supporting MND Scotland, in memory of Aaron Souttar, another young life lost too early. His parents, Jack and Heather, are dear friends also.”

Sandy Young/scottishphotographer.com

With something for every sports enthusiast, John hopes the collection will find passionate new owners and raise a significant sum for two very special charities.

To view the lots and place a bid, visit https://weareeventpal.com/jrgroup.

The auction launched on Monday 30th June.

You can also donate to the charity via the link:

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The JR Group was founded in Govan in 1995 as a scaffolding business and has grown to become one of Scotland’s largest building and construction firms – employing around 200 staff.

The JR Group has a proven track record of delivering outstanding projects for leading UK housebuilders, registered social landlords and private clients across Scotland and the North of England.

For more information visit www.thejrgroup.co.uk or call 0141 849 6711. 

MND Scotland announces exciting motor neuron disease research learning event in Edinburgh

MND Scotland is proud to announce a free interactive and educational research event taking place on 26 September 2024, 2pm at Bonnie and Wild Marketplace, St James’ Quarter, designed to bring together people affected by motor neuron disease (MND) and local MND Scotland researchers. 

The Lived Experience and Researcher Network (LEARN) is a project first run by MND Scotland in 2023. The 2023 pilot invited people with MND to take tours of researcher’s labs and provided useful feedback to improve engagement events for people with MND and researchers.  

This year, MND Scotland’s research team has organised a series of local events in Glasgow, Edinburgh, Dundee and Aberdeen to build relationships between researchers and people affected by MND and allow them to share knowledge and experiences. 

At the Edinburgh event, there will be an opportunity to allow people with MND, carers, family and supporters to meet and engage with local MND researchers, to learn more about their work, and hear from presenting researchers Prof Tom Gillingwater, Dr Hannah Smith, Andrea Salzinger and Dr Marcus Keatinge. 

Paul Jensen, research lead for MND Scotland, said: “As a charity that directly supports people living with this devastating disease, it’s so important to be able to provide these opportunities to allow researchers and people affected by MND to come together and get to know one another.

“People are so keen to hear about the fantastic MND research going on in Scotland and our events will provide that learning opportunity in a relaxed and personal environment.” 

MND Scotland supports the idea that the input and viewpoints of those with lived experience is vital to help guide research.  

Paul added: “MND Scotland is now at the forefront of involving those with lived experience in research funding calls. We know it is so important that both scientific merit and opinions of those with lived experience are used to help ensure we fund the best MND research.

“Our LEARN events will help build relationships between people affected by MND and researchers and allow them to share their opinions to help guide MND research in the future.” 

The informative and engaging event will explore the latest developments in research for those affected by MND and hopes to build relationships between those with lived experience and researchers to make sure that research reflects the needs of people with or affected by MND. 

MND Scotland invites those interested in th researceh learning event to hear more about their contribution in the fight against MND. 

 Event details: 

  • Date: 26 September 2024, 2pm 
  • Location: Bonnie and Wild Marketplace, St James’ Quarter Level 4, St James Cres, Edinburgh EH1 3AD
  • Organiser: MND Scotland 

For more information or to register, please visit the MND Scotland website:  

www.mndscotland.org.uk/events

MND Scotland launches network to connect people with MND and researchers

MND Scotland has launched a network of events to bring together researchers and people with, and affected by, motor neuron disease (MND) to help drive research through shared knowledge, ideas and lived experience. 

Following a series of successful pilot events in 2023, the Lived Experience and Researcher Network (LEARN) aims to connect MND researchers and people with MND. In the pilot, seven people supported by MND Scotland were invited to take tours of researcher’s labs, allowing researchers and people with MND to connect, while also giving researchers the opportunity to directly hear the opinions of people affected by MND on research. 

This year, LEARN will invite people affected by MND to meet with researchers in Aberdeen, Dundee, Edinburgh and Glasgow during September and October, and culminate with a whole day event in March 2025.

Dr Jane Haley, Director of Research at MND Scotland, said: “We know that people with MND are eager to learn more about research happening here in Scotland. MND Scotland’s dual role, delivering support and funding research, means we can provide opportunities for people to learn about research directly from the researchers themselves.

“Building relationships between people with lived experience and researchers introduces real world perspective which helps ensure that research reflects the needs of people with, or affected by, MND.

A better understanding of the condition and the needs of people affected by MND will also help researchers better communicate their work in a manner, and using language, that is accessible to everyone, no matter what their level of scientific knowledge.

Dr Christopher Henstridge, a Principle Investigator who runs his own lab in Dundee, participated in the LEARN pilot. He said: “As a lab-based research team, we rarely get the opportunity to hear directly from people affected by MND about their experiences of the very condition we are trying to understand and treat.

“Last year, we hosted three people in Tayside affected by MND for an afternoon of lab tours and research discussions. For us, this was a great opportunity to practise talking about our work in a language that can be easily understood.

However, talking about our research is what we do every day, so the most impactful conversations were the personal stories so honestly and openly shared by people with lived experience.

“The strength and courage they show every day is inspirational and we really appreciated the interest and insight they showed in our research. I hope that the experience gave everyone that came along insight into the scientific process and instilled real hope that there are a lot of researchers like us pushing hard to find effective treatments and a cure.

“When I come into work and discuss the research projects with lab members, I no longer think of “MND”, I think of the individuals affected by it and this emotional connection really drives me to ensure we are doing rigorous and impactful research.

“I believe these interactions are extremely important and I’m delighted to hear that MND Scotland plans to expand the LEARN scheme and develop new ways of bringing even greater numbers of researchers and people with lived experience together.”

LEARN is a three-stage initiative that will conclude with an event in Edinburgh in March 2025, hosted in partnership with fellow MND charity, My Name’5 Doddie Foundation:

Stage 1

MND Scotland will host drop-in sessions in Glasgow, Edinburgh, Dundee and Aberdeen between September and October 2024. These sessions aim to form relationships between people with lived experience of MND and researchers.

The drop-in sessions will be held at the following locations – 

Aberdeen Science Centre, Aberdeen – Monday 9 September 2024

Bonnie and Wild, St James’ Quarter, Edinburgh – Thursday 26 September 2024

MND Scotland Office, Glasgow – Thursday 3 October 2024

Dundee Science Centre, Dundee – Thursday 24 October 2024

Stage 2

Stage 2 will involve laboratory tours, much like the pilot, allowing people affected by MND to get a first-hand view of MND research. This will give people a behind-the-scenes look at how MND research is carried out and provide an opportunity for those affected by MND to share their thoughts on research and how to make MND research more accessible.

Stage 3

LEARN will conclude, in March 2025, with a day-long event at Dynamic Earth, Edinburgh, where My Name’5 Doddie Foundation will be joining MND Scotland to work in partnership to deliver the event.

The day will offer information for researchers and training opportunities for ECRs, along with sessions involving people with lived experience of MND.

The collaboration between MND Scotland and My Name’5 Doddie Foundation reflects the shared commitment between MND charities to push for a world without MND.

More information about the events will be available on our website, via our newsletters and social media channels. www.mndscotland.org.uk

To provide more details on the events and the aims of LEARN, the MND Scotland research team will host a webinar at 12.30 pm on Friday, 26 July 2024.

To sign up for the webinar, please complete this form:

https://forms.office.com/e/ewyTKeCHBs

My Name’5 Doddie Foundation grants £50,000 to help people with MND

 

MND Scotland has received £50,000 from My Name’5 Doddie Foundation to support people with MND across Scotland with the cost of living. 

The money will be distributed by MND Scotland as a one-off cost of living support payment up to the value of £350.  

Since 2018, the Foundation has committed a total of £480,000 to MND Scotland to further its work supporting people affected by the disease in Scotland.  

Rachel Maitland, MND Scotland’s Chief Executive, said: “This one-off payment will be welcome news and we’re proud to partner with My Name’5 Doddie Foundation to deliver this additional financial support directly to the people who need it most.

“A diagnosis of MND can bring with it a financial strain so the current cost of living crisis may disproportionately impact those with the disease. This money will therefore provide extra help to people living with MND who may be struggling with household bills or the cost of food shopping at the current time.”  

Jill Douglas, CEO of the My Name’5 Doddie Foundation, said: “We’re acutely aware of the impact that MND has on those living with the disease and their families. For many, the rising cost of living will make an already terrible diagnosis even more distressing.  

“One of My Name’5 Doddie Foundation’s core pillars is ‘support’ and we’re proud to work with our friends at MND Scotland to provide assistance to those living with MND. These grants are made possible because of our brilliant supporters and thanks must go to them for their efforts.” 

Funding for Motor Neurone Disease research

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.” 

‘An inspirational force of nature’: Tributes pour in for Doddie Weir

My Name5 Doddie Foundation:

We are deeply saddened to share the news that our founder Doddie Weir has died. Doddie was a force of nature, a great family man, tremendous rugby player and loved and respected by all who knew him.

Our thoughts are with Kathy, Hamish, Angus and Ben and we know you will join us in sending them our love and best wishes at this time.

Jill Douglas, CEO of My Name’5 Doddie Foundation and close friend of Doddie’s said: “Doddie enjoyed a full life full of fun and love. And it was this approach to life which shone through in his determination to make a difference and help others when he was diagnosed with motor neuron disease.

“He inspired us every day with his positivity and energy and was fully committed to the work of the Foundation he launched with his close friends in November 2017. My Name’5 Doddie Foundation continues to shine a light on MND and the need to seek meaningful treatments and one day, a cure for this devastating disease.

“The Foundation has raised significant funds through the amazing efforts of our incredible supporters and has committed £8 million to MND research over this time. We have also given considerable funds to people living with MND and their families to help them live as fulfilled a life as possible.

“With Doddie’s enthusiasm and drive, we have collaborated with other stakeholders within the MND community and firmly established the Foundation as a trusted, influential and well supported charity.

“And our vision of a world free of MND remains at the heart of our strategy. As we look to the future, we will honour Doddie’s name and deliver on his legacy. There is much still to do and with your support, we will continue our work, remaining true to the values and ambition of our founder.”

MND Scotland:

We are deeply saddened to hear that Scotland rugby legend, Doddie Weir, has died aged 52 from motor neuron disease (MND).  

The former British and Irish Lion, announced his diagnosis of MND on Global MND Awareness Day (21st June) 2017, and went on to raise an incredible amount of awareness of the disease by sharing his journey.  

Doddie won the hearts of the Scottish public with his humour and positive attitude, and inspired them to join our cause, so that one day we will find a cure. 

Following his devastating diagnosis, Doddie set up the My Name’5 Doddie Foundation, to fund research into finding treatments and a cure. The foundation has also helped families living with MND in Scotland, by donating almost half a million pounds over five years to MND Scotland’s grants programme, which helps relieve some of the financial burden that comes with living with the disease. 

Doddie dedicated so much of his time to raising awareness of the illness, particularly through his moving BBC Documentary ‘One More Try’, his appearances on BBC Breakfast with fellow sports stars Rob Burrow and Stephen Darby, and in his most recent book ‘Doddie’s Diary’. 

In 2021, Doddie joined forces with MND Scotland, the MND Association, other people living with MND, and neurologists, to call on the UK Government to invest £50 million over five years into targeted MND research.

The petition started in his name received over 110,000 signatures in support of the ‘United to End MND’ campaign and led to a debate in UK Parliament. Thanks to the incredible efforts of all involved in the campaign, the UK Government announced its commitment to investing £50 million into targeted MND research in November 2021.  

Doddie’s tireless efforts to create change will leave a lasting legacy. We will continue fighting in his memory, and for everyone else we have lost. Together, we will beat MND.  

Rachel Maitland, Chief Executive of MND Scotland, said: “Doddie Weir was a huge inspiration who will be missed by so many. His bravery in sharing his experience of living with MND helped raise vital awareness across the country and beyond.  

“The My Name’5 Doddie Foundation contributed vital funds towards MND Scotland’s grants programme, which provides essential financial support to families affected by MND in Scotland.

“Together, we called on the UK Government to invest £50 million into targeted MND research, through our United to End MND campaign. The success of this campaign brings new hope of finding meaningful treatments and a cure sooner.  MND does not wait for anyone and now we have another person taken too soon because of this cruel disease.   

“We cannot thank Doddie enough for his support and contribution to improving the lives of those living with MND, and for all he did for the cause. 

“I wish to offer my deepest condolences to Doddie’s family, friends and the foundation at this extremely difficult time.” 

Scottish Rugby issued a statement on behalf of the Weir family:

Rob Burrow MBE:

So sad to hear the news of the passing of my mnd hero Doddie Weir. I’m sorry to say, how many more warriors die before this stupid government give the 50m they said they would give.

I’m absolutely gutted to see my friendly giraffe die. You are the reason for being so positive RIP

First Minister Nicola Sturgeon:

This is so terribly sad. Doddie was one of our nation’s sporting legends, but the brave way he responded to MND surpassed anything ever achieved on the rugby pitch.

He refused to let it dim his spirit and did so much to help others. My condolences to his loved ones. #RIPDoddie

MND Association:

We’re sorry to hear that Doddie Weir OBE has died. Since sharing his MND diagnosis in 2017, Doddie became an inspiration to many, raising awareness and campaigning tirelessly on behalf of those with MND.

Our thoughts are with Doddie’s wife Kathy, his 3 sons, family and friends.

Hearts fan shares MND diagnosis

Lifelong Heart of Midlothian supporter, Stevie Morris, is speaking out about his diagnosis of motor neurone disease (MND) to raise awareness, in support of the Club’s partnership with MND Scotland. 

Thanks to an innovative sponsorship deal with Dell Technologies, MND Scotland’s logo is taking pride of place on the front of the Hearts home kit for the 2021/22 season. To help raise more awareness, Stevie, from Mid Calder, is sharing his experience of living with MND and what the partnership means to him and his family.

Before being diagnosed with MND, the Tynecastle Park season ticket holder used to love playing sport, including football, walking football and golf multiple times a week. 

He said: “I used to live a very active life before my diagnosis, and it has been really tough having my ability to play sport gradually fade away to the point where I just can’t do it anymore.

“I’m someone who likes to take care of their garden, but this past gardening season I was even starting to find mowing the lawn to be too much.”

Stevie, who is married to Mary (61) and dad to Craig (37), used to attend every Hearts game, both home and away, but due to his worsening condition, is sadly unable to travel to watch away games anymore. 

“Hearts has always been a huge part of my life. It’s really important to me and I used to love travelling to the games on the Livingston Hearts supporter’s bus, but I can’t do that now. The walk to the ground from the bus is just too far. Even going to home games, I have to get dropped off right at the entrance and am in the process of moving my season ticket seat, so I don’t have to walk as far.

“Right now, I am still able to get down to the pub on a Sunday to watch other TV games, something I’m still really glad I can do.”

Stevie first suspected something was wrong during a round of golf, when he experienced a freezing cold sensation in his foot, something which seemed even more unusual given the warm weather on the day. 

He said: “From visiting my doctor to being diagnosed took around nine months in total. There was a lot of testing involved and other things that had to be ruled out. At first, I thought it might have been a trapped nerve but sadly it was more serious than that.”

Stevie was diagnosed with MND in February 2021 and less than a year on is having difficulty getting up and down stairs, as well as relying on a breathing machine at night. 

“Being diagnosed with MND was devastating obviously. It just floored us and the whole family went through a period of complete disbelief. Although I found it very difficult to tell my family and friends, the hardest part was definitely having to tell my dad.

“For the past three games, I’ve taken my dad for hospitality at Hearts, which has been an amazing experience for us both and something very special we could do together.” 

Stevie and his son Craig are extremely happy about the partnership between Hearts and MND Scotland and have both got the strip with the charity logo. 

He continued: “MND is a horrible disease. For my team to be involved in such a positive and direct way is tremendous. I hope the money raised from the partnership will allow MND Scotland to continue helping people in my situation. The support and services they provided me with really helped to take a load off my family – they are magnificent. 

“I hope the message gets through that MND can affect anyone. I’m a fan, who is there every week. I’m your midweek, go to Inverness or Ross County fan. I’m a fan that will have a sing a long on the supporter’s bus, and a beer before and after the match. Hearts are my team. My wish is that no one else misses out on future games because of MND.” 

MND Scotland’s Head of Fundraising, Iain McWhirter, said: “Our partnership with Hearts has been amazing so far, and both the club and its supporters have played an enormous role in our effort to raise vital awareness and funding, to help change the lives of people living with MND today.

“I want to thank Stevie for bravely speaking out about his story and sharing his experience with us.”

To help people like Stevie, and to join MND Scotland’s search for a cure, please donate today.

Hearts back charity call to UK Goverment for £50 million

Heart of Midlothian FC is showing its support for 21/22 front of shirt partner, MND Scotland, by joining a call to the UK Government to invest £50 million into motor neurone disease (MND) research.

The Club proudly launched its new home kit for the 2021/22 season in July, with charity MND Scotland taking pride of place on the front of the jersey, thanks to an innovative two-year sponsorship deal with Dell Technologies.

Over the past year, the Club and its supporters have undertaken several fundraising activities as a tribute to former captain, Marius Zaliukas, who tragically lost his fight to MND in 2020.

Now, the Heart of Midlothian players are standing with MND Scotland, to urge the UK Government to invest£50 million over five years into targeted MND research.

The United to End MND campaign is being led by a coalition which includes MND Scotland, the My Name’5 Doddie Foundation, the MND Association, people living with MND, and neurologists from across the UK.

Currently the UK Government’s funding for targeted MND research stands at less than £5 million a year, which the 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.

Just last month the coalition delivered a personal letter from people living with MND to 10 Downing Street, which stated ‘MND is a death sentence’ but that ‘research has now reached a point where a cure or life-saving treatments can be found’.

It continued ‘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’.

Andrew McKinlay Heart of Midlothian Chief Executive, said: “We know all too well at Heart of Midlothian the devastating impact MND has, having lost one of our own, Marius Zaliukas.

“If there was a cure, or effective treatments, Marius could still be with us. That’s why we are here today to support this call to the UK Government, for more targeted investment into MND research. 

“The work MND Scotland does to support families living with this frightening disease is hugely important, as is their drive to find a cure for future generations. We are united with them to help end MND.”

Rachel Maitland, MND Scotland’s Chief Executive, said : “The support United to End MND has received from people in the community, politicians, clinicians, researchers and partners has been incredible to date, and we thank Heart of Midlothian for joining with us too.

“Too many lives like Marius’ have already been lost to MND, and people living with the disease today do not have time to wait for a cure. 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.”

A bid for investment has been submitted to the UK Government’s Spending Review, and the call 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 coalition have also met with key politicians to explain the desperate need for the cash, to shore up the investment made by charities and industry.

To find out more about the campaign visit www.mndscotland.org.uk/united or tweet your support @MNDScotland @MNDAssoc and @MNDoddie5 using #United2EndMND.

From MND patients to the Prime Minister: We need your help NOW


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.