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.”
Rugby legends unveiled as MND Association patrons
Two legends of Rugby League have been announced as patrons of the MND Association, in recognition of their efforts which have so far raised almost £3million.
Rob Burrow MBE, who is living with MND, and his former Leeds Rhinos team-mate and friend Kevin Sinfield OBE, have both contributed significantly to fundraising and awareness-raising of MND and the work of the MND Association.
The announcement comes today, on 7/7, in recognition of Rob’s playing number and which has been hailed by Leeds Rhinos as #RobBurrowDay, with huge support from social media.
It also marks the day on which Kevin takes on his latest challenge – a marathon around Saddleworth, in Greater Manchester, starting at 7am.
He is hoping to boost the total raised, inspired by Rob, and hit the £3million mark. Kevin’s efforts in his 7 in 7 Challenge – which saw him complete seven marathons in as many days – led to the creation of a dedicated £1million fund to lead new research into potential treatments.
To mark their inspirational support in the 18 months since Rob’s diagnosis, the MND Association invited Rob and Kevin to become patrons, the highest profile role the charity can offer to a volunteer in acknowledgement of significant support and commitment.
Kevin says: “I would like to thank the Association for inviting Rob and I to become patrons.
“I have been so touched by the many stories I have heard from within the MND community and I am committed to continue my support to them for as long as it takes to find a breakthrough.
“For those who knew Rob during his rugby career, he was always an inspiration but he has taken that to a new level to motivate thousands of fundraisers to raise nearly £3million in his name.
“On behalf of all of them, I would like to say a massive thank you to Rob and his family for the encouragement they give us all.”
Rob says: “It is a huge honour to be invited to become a patron of the MND Association and I am delighted to accept.
“I have seen first-hand the incredible work the charity does not just with those living with MND but also their families and loved ones.
“Personally, I would like to thank everyone who has taken part in the countless fundraising activities over the last 18 months to help raise funds to support the MND community and vital research.”
Chief executive of the MND Association, Sally Light, adds: “It has been a privilege to work with Rob and Kevin over the last 18 months and we are very much looking forward to developing that relationship in their new role as patrons.”
The Spennylympics: Going for gold in the name of MND
80 different sports will be taking place at this year’s Olympics and one couple are looking to tackle them all to raise money for MND research.
Olympic fever will be hitting the UK soon as the postponed Tokyo games finally get underway next month.
With athletes from around the globe competing in various sports, one couple from Bristol are looking to emulate this in the name of motor neurone disease (MND).
Charlotte Nichols and Stuart Bates have set themselves the enormous challenge of completing every event that will take place in this year’s games while it is on.
From archery to boxing, javelin to hockey the pair will try their luck at every sport this summer to raise money for the MND Association.
Stuart had a close connection to this cause, having lost his brother Spencer to the disease.
He was given two years to live by doctors after his diagnosis, bravely passing away in August 2011.
He loved nothing more than his young family, leaving behind his wife Nicky and two young sons Samuel and Issac.
This had a devastating impact and Stuart spoke about how hard it was to see his condition progress.
“It’s one of the most debilitating, terrible diseases that there is for the victims but also for the people that love them.
“When he died, his sons that he loved completely were four and seven years old and it’s so hard as a young family to have that hope stripped away from you at the time of diagnosis.
“Then just to deteriorate at the rate that he did, with everybody that loves you watching, it’s so hard to go through.”
The event will mark ten years since his passing and is being named the ‘Spennylympics’ as a tribute to him.
Spencer was a keen sports fan and would spend hours with his brother watching events like the Olympics, which is where the idea for this came from.
“I’ve always planned for this year to do something pretty big and spectacular to mark his memory,” Stuart said. “Every time the Olympics came around, we would watch every single event and become instant armchair experts on whatever was going on.
“The idea for doing every event has been in my head for a while now, but I didn’t want to say it out loud because I thought people would tell me it’s impossible.
“As soon as I mentioned it to Charlotte she was exactly the same as me, she said ‘we have to do it.’”
The MND Association helped Spencer through his battle with the condition, providing equipment, care and advice for him and his family.
While he was alive he did all he could to give back to the charity and help raise the profile of the disease and Stuart and Charlotte are looking to continue this work through the Spennylympics.
With the event being such an enduring challenge it has attracted the attention of some high profile names, a lot of which have agreed to help train the pair for the challenge.
Over 50 current and former athletes are involved, including Olympic pentathlon silver medalist Samantha Murray, triathlon world champion Non Stanford and former GB boxer Amir Khan.
Charlotte spoke about how much their support has helped the cause.
“It’s been so surreal,” she said. “All the athletes have been so good and happy to help, I don’t think anyone has said no to us when we have asked.
“Sometimes our phones will ring and it will be a three time gold medal Olympian, which is amazing. They couldn’t do enough for us.”
The challenge has received a lot of media attention from publications like the Irish Post and the Dorset Echo, which has only got the word out to more sportsmen and women.
“We’ve been getting well known Olympic athletes contacting us asking if they can get involved,” Stuart said. “So that has been really humbling for us.
“I think people have seen the challenge and because it’s a bit unusual and it has never been done before they want to be a part of it, which is really exciting.”
Charlotte and Stuart began their training for the event at the start of the year, competing side-by-side in a lot of the sports but also facing each other in the events such as table tennis and badminton.
Both said they were nervous about completing the challenge but have enjoyed the opportunity to do something so unique.
“The event terrifies me, there’s a lot of sports which are quite scary,” Charlotte admitted. “Such as the 10k swim, the ten meter dive, the boxing and the show jumping, but we’re so excited.
“We have had so much fun learning all these sports. When you get the chance to do sailing, taekwondo and kayaking all within two days of each other, it’s ridiculous.
“It’s been fun so far, but we know it’s going to be hard and a challenge, there are some events that really will kill us, but hopefully the money we raise will be worth the pain.
As tough as the event will be, both know that the efforts in both raising money and awareness for MND is what will keep them going.
The effort to do this is something Stuart has been doing for a long time now, having helped his brother organise numerous events in the past as well as doing his own fundraising such as rowing 100 miles up the River Thames.
“Spencer was determined to raise the profile of the disease,” he said. “So as a family we have now raised around £100,000 for these causes and that is the legacy he would have wanted to leave.
“He would be massively proud of us but he would also be laughing his socks off at the pain we are going through, seeing us try to do gymnastics and diving, he would be in pieces.
“If there was a chance to see me suffer Spencer would have been at the front of the queue, as he was my best friend.”
Radio presenter raises thousands for MND as a tribute to her dad
Fern Balch lost her dad to MND a decade ago and now she is remembering him while raising money for the MND Association.
A radio presenter has raised over £5,000 for the MND Association and paid tribute to her late father by cycling over 100 miles to visit all of his former football clubs.
The ‘Tour de Tim’ featured twelve different teams across Dorset and Hampshire which he either managed or played for, all of which he had an impact on.
Despite being fit and busy all his life Tim was diagnosed with MND in March 2010, with its fast progression taking its toll on both him and his family.
Speaking to NR Times, Fern spoke about the impact the disease had.
“It was really strange when he actually started to get symptoms of MND,” she said. “He began to get unsteadiness on his feet, dizziness, he kept losing balance and then struggled to hold a pen and write.
“After his diagnosis he was just getting progressively worse every day, he couldn’t drive or walk anymore and he had to be put in a wheelchair.
“Eventually he couldn’t breathe by himself and he couldn’t eat by himself or go to the toilet.
“He was six foot two and very fit, so to see someone so strong degenerate every day was very difficult.”
Tim was then under constant care, with his wife quitting her job to help run his business and share the responsibilities with a 15-year-old Fern.
Their home was effectively changed into a hospital with hoists, chair lifts and toilet commodes all installed which completely changed the family’s lives.
Despite this Fern still has some amazing memories of her father and spoke about what a vibrant person he was.
“What’s been so lovely about the fundraiser is that I’ve heard so many stories about my dad which I wouldn’t have known,” she said. “Every single story just points to this character that he was.
“He was bubbly and he would light up a room. He was always asked if he was a celebrity of some kind because he carried himself in a certain way.
“He could talk for hours and hours and oozed confidence. He was just my best friend and we were really close, so to lose him at such a young age was really hard.”
Tim was immensely popular in the local footballing community and this is partly the reason why the fundraiser has been such a success.
When he first received his diagnosis 11 years ago knowledge and treatments around MND were a world away from where they are now.
The condition was a relatively unknown one then with Tim’s doctor at the time being baffled by his symptoms, initially diagnosing him with repetitive strain injury from his goalkeeping days.
He was the first case of MND his doctor had ever come across, but Fern says a lot of this has now changed thanks to the work of organisations like the MND Association.
This is one of the reasons why Fern undertook the challenge, to allow people to understand more about the condition.
“People have got in contact with me during the cycle saying they didn’t know MND was a problem and they didn’t understand how bad it could get.”
“Something that stands out to me is that when my dad was poorly, but he could still get out and about, we went shopping once and he stumbled onto his knees.
“After that someone walked by and said ‘oh I bet he’s drunk’ and we all heard it. He wasn’t at all, he was disabled.
“I hope that by people knowing the symptoms and what it can cause there might be a little bit more understanding if they see someone not being able to drink their drink properly at a coffee shop or lift their arm.
“Hopefully they might be a bit more compassionate and open to the fact that these people are poorly.”
The cycle was tough for Fern but she knew it was all worth it, with the event part of a number of efforts she has given to the organisation since her father’s passing.
“I really wanted to do something to honour the help that they gave to him. I know what they can provide and it’s gotten better year on year in the decade that my dad’s not been here.
“They’ve come up with the Voice Banking project in Dorset which has enabled people with motor neurone disease to record their own voice so that when they lose the ability to talk, they can still communicate with their family members.
“I’ve worked quite closely with them on the project over the last couple of years and it’s something I hold really dear to my heart.
“I want to see it improve and be rolled out across the whole country because everyone with MND deserves the right to talk and be able to communicate with their family members
“Anything I could do to contribute to research and contribute to another family like mine who have come through something so devastating.”
To find out more and donate, click here.
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