Heart of Midlothian Football Club have committed their support to helping fund a cure for motor neurone disease (MND) by naming one of Scotland’s leading neuro charities as the men’s shirt sponsor for the upcoming season.
MND Scotland will have their logo placed on the front of each jersey for the 2021/21 campaign in a bid to raise both awareness about the condition and money for the charity.
The Edinburgh-based team are also using the deal to pay tribute to club legend and former captain Marius Žaliūkas, who tragically lost his battle with MND last year.
The average life expectancy for MND patients is just 18 months after diagnosis according to the charity, but the Lithunaian defender lived for the condition for nearly seven years.
Žaliūkas passed away aged 36 and was adored by fans, being part of the team that won the 2012 Scottish Cup.
Ann Parks, Director of Partnerships and Community at Hearts, spoke about what impact he had on the club.
“He had an iconic status at the club,” she said. “He was part of what many regard as the greatest ever Scottish Cup victory, which is forever written in the club’s history and folklore.
“He was much loved and it was absolutely shocking when we found out. His family wanted to keep it quiet so it was a tremendous shock when he died at such a young age.
“We are incredibly proud that we could choose MND Scotland, there could be no better tribute to our former captain.
“Equally it’s a really important message for supporters and the families of people affected by MND.”
Žaliūkas isn’t the only person who the partnership is dedicated to.
Robert Wilson was a former director at the club from 2011 and played a huge part in its restructuring after some serious financial difficulties.
He was diagnosed with MND that ended up being fatal and Ann spoke about how his work has helped change the team.
“Robert helped oversee the period that would eventually lead to full fan ownership of Hearts,” she said. “I had the pleasure of working with him for the first year where we were basically putting right all the things that were wrong with the club.
“I wanted to make the point that we are dedicating this to Robert who was fundamentally important in getting the club back on its feet.”
Hearts are also hoping to get its fan’s talking about MND as 200 people a year are diagnosed with the condition in Scotland, a number which seems to be growing.
“MND Scotland has been an absolute dream to work with,” Ann said. “They are really pragmatic about getting a deal which is good for them as well as being smart about the kind of things we can do to raise awareness.
“So many people have their lives touched by MND so the deal has brought on an enormous amount of support, not just from our supporters but from those of other clubs.
“The fan’s reaction has been tremendous, they’re incredibly proud and quite emotional that they can pay tribute to their heroes in this way.”
“Because we are so connected to the community and we have such a big supporter base, we can really amplify these messages to make people more aware and hopefully galvanise them to get involved.”
Iain McWhirter, interim chief executive at MND Scotland, also discussed the overall message of the campaign.
“We are very excited to be partnering with Heart of Midlothian FC this season,” he said. “This fantastic opportunity will honour the memory of former captain Marius Žaliūkas who passed away last year after a brave struggle against motor neurone disease.
“We hope this boost will enable us to speak to even more people about our cause and that the funds donated through sales will help us reach our ultimate goal of finding a cure.
“Until that day we will continue supporting families affected by MND in Scotland, so they do not have to go through the devastation alone.
This funding is another vital part of the campaign, with a lot of charities suffering in this regard because of the events of the last year.
The Jambos, as they are often known, will be donating a portion of the profits from every shirt sold to MND Scotland to help tackle this.
With no current cure for MND, Hearts are hoping some of the money raised will help fund research to end this problem.
They are particularly looking to see its impact locally, with some funds going towards projects at the Euan MacDonald Centre for MND Research at University of Edinburgh.
“I think this is a sponsorship model that other clubs can pick up,” Ann said. “I think that would make a major difference.
“It feels like a privilege in a way that we’ve got such an amazing charity in MND Scotland as the work they do is so important.
“We’re looking forward to what I’m sure is going to be a great relationship with them for the season ahead.”
Dell Technologies are also involved with the deal as they have volunteered to cover the costs of the sponsorship for MND Scotland.
The computing giants have previously been involved with supporting other neuro charities in recent years, such as the MND Association of England, Wales and Northern Ireland.
Hearts have been working with Dell for a number of years now, having run a previous campaign to help young girls get into the technology and sports industries.
The football club also helped produce over 800 meals a day for those who needed them when the first lockdown hit the UK last March.
It is also a strong believer in responsible sponsorship, shown by this recent deal, further emphasising the sense of community the club has.
“The club is quite different from others,” Ann said. “We only want sponsorships and things that are supportive of the community.
“There would be no club without the community, so we do a huge amount of work on an educational and social support level.
“The deal with MND Scotland helps get the message across to supporters about the values that underpin the club.
“I think we’ve developed a great model of socially responsible football sponsorships.”
‘I want to ensure no-one endures what my dad did’
A lack of appropriate resource for Abbie Coutts’ father in his MND battle inspired her to make change
From her father’s battle with MND and a lack of appropriate care and support came Abbie Coutts’ desire to make a change within the medical profession. Here, she shares her story of becoming an educator, dedicated to equipping healthcare workers with greater ability to support patients and their families
“From a young age I was always determined not to be a nurse. My sister was a nurse, my mum worked in a care home and I decided that I was going to do something completely different.
“I left my childhood home of Cornwall to study Film at Kent University, Canterbury which I absolutely loved. When it became apparent that there weren’t that many jobs in that field, I joined the Ambulance Service in Berkshire then later Edinburgh and really enjoyed it. Getting a taste of the medical world, I found myself delving further into the area I’d always avoided and did a shortened course for graduates in adult nursing at Napier University, Edinburgh, and so my nursing career began.
“My first job was back in Cornwall as an intensive care nurse and I really thrived in that fast paced, highly pressurised environment. I then moved into cardiology before going on to being a practice educator for radiology and cath labs, teaching staff and making sure that they were equipped with the knowledge needed to deliver high quality care safely. At this time I started learning and teaching human factors, which looks at teamwork, tasks, human performance and how error can occur in highly complex environments and systems which can trap errors and improve safety for patients.
“It was around then that my beloved dad was diagnosed with Motor Neurone Disease (MND) and given between two and five years to live.
“He was unwell for a while and initially it was suspected that he’d had a stroke or similar, so it was quite a shock when he received the diagnosis. It is the diagnosis you always dread.
“Unfortunately, he wasn’t able to receive any specialist care in Cornwall and he deteriorated very quickly with the disease, losing his ability to swallow and speak. He passed away nine months later and my family were devastated.
“Looking back on his final months it was very clear to the family that there were quite a few issues with the care he received, most stemming from the fact that expert care wasn’t available.
“We spoke to the hospital about this and I decided to offer a series of lectures over the course of a week speaking to staff about MND and how a human factors approach to his care would’ve changed many of the mistakes and errors we encountered.
“I was very determined that my lecture was impactful and that going forward, future patients would receive much better support. I did six lectures a day for a week at the hospital to all staff from consultants to house-keeping.
“My dad went through a very cruel nine months in the lead up to his death and I wanted to do something to help ensure this didn’t happen again. I wanted to support the staff and raise awareness. After that I went on to give lectures about this at a palliative care conference in Aberdeen and in 2018 I spoke at the Manchester Patient Safety Conference.
“When I was offered the nursing lead role at Sue Ryder Neurological Care Centre Dee View Court in July last year, it was like I was facing the biggest nemesis possible. I had actually applied for the practice educator role but they must have seen how passionate I was about the importance of safety in care and felt I was a perfect fit for the lead nurse position.
“I had given so much of myself to the lectures I really didn’t think I’d have the capacity to nurse people in the same situation as my dad.
“At the same time, I was very drawn to the job and knew it would give me the opportunity to ensure that the residents there would receive a standard of care that my own dad should have had and deserved to receive. So I accepted the job and worked in the role until May of this year, when I moved into to the practice educator role at the centre, which had since come up again.
“In this role I have been teaching using a human factors approach since day one. This involves looking at how certain factors influence how we behave and realising that we can’t rely on humans not to make mistakes, so putting processes and systems in place to trap error before it occurs. This ensures that my high standards of safety in care are absorbed by my colleagues and in turn rolled out across the centre.
“I am also responsible for the induction of staff, monitoring their training and making sure that our staff is fully aware of the condition each of our residents is living with, the difficulties they face and the development of a clear bespoke action plan for each. The care delivered at our centre is very person centred and tailored for each individual, which in turn makes it safe.
“I think it’s true to say that my dad’s experience really does fuel my practice every day in making sure the residents at Dee View receive the best possible care and that the staff are supported in their practice.
“My overall goal is to make sure that no resident ever has to endure what he did. Not always consciously, I seem to have made it my life’s work to do what I can to ensure that history doesn’t repeat itself. I know that my dad would be proud of this career choice.”
New MND centre appeal backed by Rob Burrow
Plans have been unveiled for a new purpose-built care centre of excellence for people living with MND, with the £5million fundraising appeal spearheaded by Rob Burrow.
Former Leeds Rhino Rob has been courageously sharing his story of MND with the public since he was diagnosed last year at the age of 37, and he has raised the profile of the condition beyond all expectations, as well as helping to raise almost £3million for the MND Association.
The new centre – The Rob Burrow Centre for Motor Neurone Disease – would support people with MND living in and around the Leeds area, like Rob. He refers to his care at Seacroft Hospital, where the MND centre is currently based, in his latest autobiography and a BBC documentary, also filmed at Seacroft, is shortlisted for a Television Award.
There are currently around 80 people like Rob being treated for MND in Leeds, double the number of people the service supported ten years ago.
Since he was diagnosed, Rob has actively campaigned to help raise awareness and raise funds in support of MND charities. Having excelled in his sporting career, he now plans to support the creation of a centre of equal standards that will benefit many more people living with this disease, alongside his friends and close supporters, which include former Leeds Rhinos player Kevin Sinfield and actor Matthew Lewis.
“Imprisoned in the brutality of MND, my vision is that people diagnosed with MND hear the news in a calming and tranquil sanctuary,” says Rob.
“I envisage a beautiful, welcoming building that is user and family friendly. A place where patients feel comfortable to bring family members into a safe and homely environment for them, with signs of hope and optimism.
“For carers of those with MND, it is important to know that their loved ones are in the best possible place. Something every MND sufferer and their families deserve.
“Although the news won’t be any better, it will be easier to come to terms with in a purposely built care centre that meets the needs of every MND patient.”
The Leeds Rhinos Foundation, official charity of the Leeds Rhinos where Rob played professionally for 16 years, have been the first to pledge £50,000 in support of the our MND centre appeal.
The appeal for a new MND centre recognises the need for a dedicated centre in Leeds, providing a better patient environment.
Originally built in the early 20th century, with care for infectious diseases in mind, the current home of the centre is now showing its age. Significantly, the technology relating to the care needs of people with MND has moved on, whilst the building remains the same.
The current MND centre is located on a busy multi-purpose ward not built with MND patients in mind and without the ability to be fitted with equipment and facilities for those who are physically impaired.
Dr Agam Jung, consultant neurologist who leads the MND team at Seacroft Hospital, says: “We want to provide a safe haven for our patients and their families – a peaceful environment that reiterates to them that they have the best possible care, helping them ‘live in the now’, a serene place that instils hope and courage.”
The vision is for a space that is bright and modern, that has windows and gardens, with spaces for families to be together, or quiet rooms to reflect in after difficult conversations.
Esther Wakeman, chief executive of Leeds Hospitals Charity hopes the new centre will provide a space for patients and their loved ones to enjoy special moments together and spark a change to MND care across the nation.
“We recognised the need for a dedicated centre in Leeds, which we know will make a huge difference to many affected by this cruel disease,” she says.
“I can envisage our centre becoming a flagship in the UK and I hope that this will inspire others to replicate this up and down the country, offering thousands of MND sufferers the best quality of life and help us get closer to finding a cure one day.”
Over £150,000 raised through Spennylympics
Two fundraisers have raised over £150,000 for the MND Association through their gruelling Olympic challenge, the Spennylympics.
To coincide with the Tokyo Olympics, Stuart Bates and Charlotte Nichols completed all 102 events featured in the Games in just 17 days, finishing with the marathon in front of a packed crowd in Weymouth.
Stuart, a window cleaner, and Charlotte, a student doctor, were aiming to raise £10,000 in memory of Stuart’s brother, Spencer (Spenny), who died of MND ten years ago.
Spencer was a keen sports fan and would spend hours with his brother watching events like the Olympics, which is where the idea for the Spennylympics came from.
The pair spent around eight months meticulously planning how to achieve all 102 events in the short time frame, while squeezing long training hours around working full time.
They also recruited around 60 current and former Olympic athletes to be ambassadors for the event with many taking time out of their Olympic preparations to help the couple learn the basics of their complex sports.
The Spennylympics hit the headlines locally, nationally and even internationally with appearances on TV screens in the USA, Japan, Russia and Ghana.
“We are feeling a mixture of elated, proud of each other and totally exhausted,” said Stuart and Charlotte.
“It was the perfect ending to finish in Weymouth where Spenny spent his whole life and to cross the finish line with a huge group of friends, family, well-wishers and world media was completely overwhelming.
“Completing 102 Olympic events in 17 days has been physically demanding and taken us to mental places that we didn’t know existed.
“To know that we have raised nearly £150,000 for the MND Association makes all of the pain worthwhile and the messages of support that we have received from those affected by MND throughout have driven us on when it felt impossible. We will continue raising awareness and money until a cure is found.”
Russell Spivey, regional fundraiser at the MND Association, said:”I have the honour of supporting many great fundraisers, branches and groups and I think Stuart and Charlotte capture the spirit of the whole MND Association with the Spennylympics.
“Every day in the UK, six people will receive the devastating news they have been diagnosed with MND. Stuart and Charlotte’s determination, passion and commitment to raise thousands for the MND Association will hopefully one day lead us to more effective treatments and a cure for this disease.
“Their fundraising is phenomenal and the awareness they have raised of MND on a global stage is immeasurable.”
To add a donation to Stuart and Charlotte’s fundraising, visit here
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