From 1st to 8th March, a group of seven friends – including wine experts, owners and chefs from some of the UK’s best restaurants – will cycle over 2700 km from Edinburgh to Rome, climbing over 27,000 meters in altitude, all in aid of Motor Neurone Disease charity ‘My Name’5 Doddie Foundation’.
The cycle will begin at Edinburgh’s Murrayfield Stadium, continuing through London, rural France and trailing the Apennine mountains of Italy before descending into the group’s final destination at Rome’s Stadio Olimpico.
Riding in a continuous relay, through the night, elements and mountains, the team aims to complete the cycle by 5pm on 8th March – which will require maintaining an average speed of 17mph.
Brought together by a mutual drive of raising vital funds and awareness of this degenerative, incurable disease, the team includes Edinburgh native and Berry Bros. & Rudd Senior Buyer Davy Żyw, who was diagnosed with Motor Neurone Disease (MND) five years ago aged 30.
Despite progressive onset of the condition, Żyw, a passionate cyclist, will join the team for the last leg of the journey from Sisteron to Rome. This is just one cycle undertaken by Żyw since his diagnosis: in 2020 he completed the North Coast 500 in just four days, and in 2022 he cycled the ‘High 5’, a 275 mile route over the five highest roads in Scotland, raising over £150,000.
Joining Żyw is his childhood friend James Porteous, owner of Edinburgh’s Electric Spirit Co; James Snowdon, owner of The Palmerston and co-owner of Lannan in Edinburgh; Seamus Sharkey, Head of Beverage at JKS restaurant group; Shaun Searley, Executive Chef at London’s Quality Chop House; Davy’s colleague at Berry Bros. & Rudd, Matt Jones, who has planned the entire route; and Dubai-based Greg Shevill who will be flying over to complete the challenge.
The cycle forms part of My Name’5 Doddie’s wider All Roads Lead to Rome campaign, with over 50,000 participants expected to take part throughout the year.
My Name’5 Doddie was set up by Scottish rugby legend Doddie Weir who was diagnosed with MND in 2017, and later passed away in 2022. The charity is committed to a world free of MND and has already raised over £11m to support research projects and treatments – and ultimately work towards finding a cure. They also focus on raising awareness of the disease and being a voice for people with MND and their families.
Details for how to support the cycle can be found at:
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.”
Sheep sculptures featured in national ‘Flock to the Show’ public art trail raffled off in 2 weeks
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There are less than two weeks to go until the Royal Highland & Agricultural Society of Scotland (RHASS) raffles off their colourful ‘Flock to the Show’ sheep sculptures, which featured in a popular national public art trail earlier this year.
There are 500 raffle tickets available for each sheep, at a cost of £25 each. The funds raised will support the Royal Highland & Agricultural Society of Scotland Bicentennial Fund, which supports projects dedicated to sustainability in the rural sector.
The popular ‘Doddie’s Sheep’ will see a minimum of £20 from the sale of each ticket donated to the My Name’5 Doddie Foundation – this sheep was decorated by Megan Reilly in the distinctive bright blue and yellow Doddie’5 tartan.
The 38 fibreglass sculptures were decorated by local artists from across the UK in a range of striking designs and travelled around Scotland earlier this year, before flocking home to the Royal Highland Show in June.
The campaign celebrated the return of the Golden Shears World Sheep Shearing & Woolhandling Championships to the Royal Highland Show. Some of the sheep have already been purchased outright so won’t be available in the raffle, but the majority still need to find their forever homes.
RHASS Chairman, Jim Warnock, commented:“The Flock to the Show campaign was a resounding success, bringing joy to people across the length and breadth of Scotland and at the Royal Highland Show.
“We are delighted that our flock raised awareness of important issues in the agri sector and they will continue to do good by being raffled off to raise funds for the RHASS Bicentennial Fund and the My Name’5 Doddie Foundation.”
Flock to the Show campaign celebrated the return of the world sheep shearing championships to the Royal Highland Show in June
The Royal Highland & Agricultural Society of Scotland (RHASS) has launched a raffle for their ‘Flock to the Show’ sheep sculptures, which featured in a popular public art trail earlier this year.
There will be 500 raffle tickets available for each sheep, at a cost of £25 each. The funds raised will support the Royal Highland & Agricultural Society of Scotland Bicentennial Fund, which supports projects dedicated to sustainability in the rural sector.
The popular ‘Doddie’s Sheep’ will see a minimum of £20 from the sale of each ticket donated to the My Name’5 Doddie Foundation – this sheep was decorated by Megan Reilly in the distinctive bright blue and yellow Doddie’5 tartan.
The 38 fibreglass sculptures were decorated by local artists from across the UK in a range of striking designs and travelled around Scotland earlier this year, before flocking home to the Royal Highland Show in June.
The campaign celebrated the return of the Golden Shears World Sheep Shearing & Woolhandling Championships to the Royal Highland Show. Some of the sheep have already been purchased outright so won’t be available in the raffle, but the majority still need to find their forever homes.
RHASS Chairman, Jim Warnock, commented:“The Flock to the Show campaign was a resounding success, bringing joy to people across the length and breadth of Scotland and at the Royal Highland Show.
“We are delighted that our flock raised awareness of important issues in the agri sector and they will continue to do good by being raffled off to raise funds for the RHASS Bicentennial Fund and the My Name’5 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 Rugbyissued 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.
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.
Mark Coulter, Founder and Director of Ellisons Property in Edinburgh and East Central Scotland, is running five marathons in five days to raise funds for Doddie Weir’s Motor Neurone Disease charity the MY NAME’5 DODDIE Foundation.
The five marathons challenge will see Mark running a total distance of 131 miles over the five-day period. Mark who is the creator & former CEO of Coulters Property, has since founded Ellisons Property in Edinburgh.
After securing their first clients in the pandemic, Ellisons has grown fast and been awarded a “United Kingdom Property Award” for “Best Property Consultancy for Scotland”.
While setting up a brand-new company might be enough of a challenge for most people, Mark is now running five marathons in five days to raise money for the MY NAME’5 DODDIE Foundation.
The foundation, which raises money for MND sufferers, was set up by former rugby union player Doddie Weir, who went public with his MND diagnosis in June 2017 and has since gone on to raise millions for MND research through the charity.
The MY NAME’5 DODDIE Foundation fundraises for research into the causes of MND and to investigate potential cures. They also provide grants to individuals suffering from MND, to enable them to live as fulfilled a life as possible.
Mark is doing what he can to support the foundation despite his lack of running experience: “Everyone who knows me knows that I am no marathon runner, hell I am not even a runner but that isn’t the point, and this challenge isn’t about me.
“It’s about the horrific disease, MND and the fact that there is no known cure. Hopefully, my small contribution will go some way to changing that and defeating this horrible disease which causes so much pain to individuals and their families!”
Individuals wishing to support Mark in “Doin it for Doddie” and raising money for the MY NAME’5 DODDIE Foundation can donate here.
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.
A Scottish Ambulance Service technician has organised a charity run from Stirling Castle to Edinburgh Castle to raise awareness of Motor Neuron Disease (MND) after losing his dad to the disease.
Sauchie resident Gregor Miller, based at Glenrothes Station, set up the Castle Crusade run last year and has been in training since October last year (2020).
The run was originally meant to be held on March 28 this year but was postponed because of Covid. It has been rescheduled for May 23, 2021 with safety precautions in place.
Joining the Crusade 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). Gregor is hoping to confirm more sporting legends to join the event.
Gregor is raising money for My Name’5 Doddie Foundation, MND Scotland and the Euan Macdonald Centre.
Gregor lost his dad, Campbell Miller, to MND two years ago. MND is a progressive degenerative disease of the motor neurones in the brain and wasting of the muscles which affects people of all ages. Campbell was a police officer, serving the Alloa and Falkirk areas during his time on the force.
Gregor, 49, said: “My inspiration for this event has come from losing my dad to this disease. My dad was diagnosed with motor neurone disease (MND) in May 2017 and passed away in 2019.
“He was a keen sportsman and played football for the police and in later life, until his diagnosis, played golf three times a week. Dad only realised he had a problem when he could no longer grip a golf club. As you could imagine this hit him hard.
“Within a few months he had to retire the clubs, quickly followed by his driving licence. For a man who was never at home due to social events, this was a devastating blow. Living with MND and caring for a sufferer of MND was horrific. Dad was given two years to live and died within two weeks of the two years.”
Gregor said his mum became his dad’s full time carer. He said in the last few months, his dad – who was a police officer for 32yrs in the then Central Scotland force – lost full power of his arms, legs and the ability to hold up his head.
He added: “There were some really tough days at this point as his mind was fully active along with his eyes. I would chat to him and tell him it’s all ok and that mum will be alright.
“He cried but never complained. This was hard to watch from a son’s point of view who only ever knew a dad that tried to win at everything physical.
“In the last month his pain become increasingly worse, he was unable to eat solid food and lost his speech to a difficult whisper. MND had won and with pain relief he slept and died.”
Despite this, Gregor said his dad kept his sense of humour throughout, always had a smile and never asked “why me?”
With current Covid restrictions, unfortunately the public will not be able to take part in the run. At any one time, only four people will be running the route. Two people, Gregor and Ryan Stevenson (Hearts FC) will be running the entire 40 miles while the other two slots will be the sporting legends dipping in and out every 4 miles. They will only do one 4 mile leg.
All participants will complete a lateral flow test before they run and will check temperatures, ensuring there are no signs of Covid.
Gregor has set up a page where people can donate, and people can also visit his Facebook, Twitter and Instagram pages. Visit here to find out more or to donate:
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.”
