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Work begins on Motor Neurone Disease centre day after Rob Burrow dying

  •  Rob Burrow, 41, passed away at Pinderfields Hospital near his home
  •  The rugby player was diagnosed with motor neurone disease in 2019

Work begins today on a new Motor Neurone Disease centre in Leeds spearheaded by Rob Burrow less than 24 hours after the rugby star’s death was announced.

The £6.8million purpose-built care centre for people with MND living in and around the city was a project close to the former Leeds Rhinos player’s heart after he was diagnosed with the incurable illness.

The 41-year-old helped raise funds for Leeds Hospitals Charity, where he received care, in the year’s following his diagnosis and up to his tragic death which was announced last night.

Following the news of his passing, which came just five years after he was diagnosed with the illness at the age of 37 in 2019, tributes were paid to the father-of-three with Prince William calling him a ‘legend’ who had a ‘huge heart’.

His friend Kevin Sinfield, who helped Rob raise £15million to help fight MND and carried his fellow former rugby star over the line in the Leeds Marathon last year, emotionally said he would miss his ‘little mate’.

Former rugby star Rob Burrow has died at the age of 41 after a five-year battle with Motor Neurone Disease

Former rugby star Rob Burrow has died at the age of 41 after a five-year battle with Motor Neurone Disease

Rob, who raised millions for MND research and treatments after his diagnosis, passed away on Sunday surrounded by his family. Pictured: Rob with his wife Lindsey at Windsor Castle where he was awarded an MBE in April last year

Rob, who raised millions for MND research and treatments after his diagnosis, passed away on Sunday surrounded by his family. Pictured: Rob with his wife Lindsey at Windsor Castle where he was awarded an MBE in April last year

His friend Kevin Sinfield paid tribute to him and said he would miss his 'little mate' after his death at the age of 41. Pictured: Rob and Kevin Sinfield during their time together at Leeds Rhinos

His friend Kevin Sinfield paid tribute to him and said he would miss his ‘little mate’ after his death at the age of 41. Pictured: Rob and Kevin Sinfield during their time together at Leeds Rhinos

Work on the £6million centre in Leeds will commence one day after the tragic news of his passing. Pictured is concept art of the centre

Work on the £6million centre in Leeds will commence one day after the tragic news of his passing. Pictured is concept art of the centre

The proposed building (pictured) will have an east and west wing, with the central space designed as a community focused area with reading and quiet spaces

The proposed building (pictured) will have an east and west wing, with the central space designed as a community focused area with reading and quiet spaces

A fan reads messages and looks at flowers left at Headingley Stadium in Leeds last night

A fan reads messages and looks at flowers left at Headingley Stadium in Leeds last night

Fans hug each other outside Headingley Stadium in Leeds today, after the death of former Leeds Rhino player Rob Burrow

Fans hug each other outside Headingley Stadium in Leeds today, after the death of former Leeds Rhino player Rob Burrow

Prince William, Prince of Wales met Rob Burrow in January to congratulate him for raising awareness of Motor Neurone Disease

Prince William, Prince of Wales met Rob Burrow in January to congratulate him for raising awareness of Motor Neurone Disease

Rob Burrow alongside wife Lindsey (who ran the half marathon), daughters Macy and Maya and Kevin Sinfield, pictured just a few weeks ago on May 12

Rob Burrow alongside wife Lindsey (who ran the half marathon), daughters Macy and Maya and Kevin Sinfield, pictured just a few weeks ago on May 12

The rugby icon passed away at Pinderfields Hospital near his home surrounded by his family after becoming ill earlier in the week.

After his death was announced, it was revealed that his family had urged the charity to press on with plans to begin construction on the MND centre in his memory.

Work was to begin on Monday with an appearance from the Burrow family and despite the news of his death last night, the charity has said construction will go ahead as planned. 

It comes after the official X account of Prince William and Princess Kate led tributes to the star and posted a touching message and expressed their condolences to his family.

Paul Watkins, director of fundraising at Leeds Hospitals Charity, said: ‘The family still want it to go ahead. That just shows how magnanimous and gracious they are.

‘All along they have thought about others.’

The build is expected to take about a year and the charity remains focused on raising the last £1million of their target.

Mr Watkins, 55, added: ‘We’ve raised £5.85 million of the £6.8 million centre and we will continue until we get there.

‘We’re just devastated at the news today. Rob’s work transcended the Rugby League community. At a time when he was most vulnerable he put himself out there.

‘Few people in the UK now don’t know what MND is, and a lot of that is because of Rob.

‘I was lucky enough to be in the room with him many times and fortunate enough to catch that glint in his eye or his smile. His smile would light up any room.

‘He was a joy to be around.’ 

The proposed building will have an east and west wing, with the central space designed as a community focused area with reading and quiet spaces.

The Prince of Wales (right) met Burrow, his wife Lindsey and their children Maya (left), Macy and Jackson in January of this year. The Prince and Princess posted a tribute today

The Prince of Wales (right) met Burrow, his wife Lindsey and their children Maya (left), Macy and Jackson in January of this year. The Prince and Princess posted a tribute today

The official X account of Prince William and Princess Kate posted a touching message and expressed their condolences to the brave legend's family

The official X account of Prince William and Princess Kate posted a touching message and expressed their condolences to the brave legend’s family

Former rugby league player Rob Burrow and his wife Lindsey pose for a photograph with his medal after he was awarded his MBE at Windsor Castle in 2022

Former rugby league player Rob Burrow and his wife Lindsey pose for a photograph with his medal after he was awarded his MBE at Windsor Castle in 2022

Leeds Rhinos posted an image of flowers and a Burrows shirt left outside the stadium

Leeds Rhinos posted an image of flowers and a Burrows shirt left outside the stadium

Burrow during the Betfred Super League semi final between Leeds Rhinos and Hull FC at Headingley on September 29, 2017

Burrow during the Betfred Super League semi final between Leeds Rhinos and Hull FC at Headingley on September 29, 2017

The Prince and Princess of Wales have paid a touching tribute to inspirational former rugby star and motor neurone disease sufferer Rob Burrow who has died aged 41

The Prince and Princess of Wales have paid a touching tribute to inspirational former rugby star and motor neurone disease sufferer Rob Burrow who has died aged 41

The official X account of Prince William and Princess Kate earlier posted a touching message and expressed their condolences to the brave legend’s family.

The post read: ‘A legend of Rugby League, Rob Burrow had a huge heart.

‘He taught us, ‘in a world full of adversity, we must dare to dream’. Catherine and I send our love to Lindsey, Jackson, Maya and Macy.’ It was signed off with a W for William.

Burrow, a fan favourite, won eight Super League titles with Leeds but after being diagnosed with the illness, he dedicated himself to raising awareness and funds for the MND community.

He did so with the support of former Leeds teammate Kevin Sinfield.

Heart-wrenching tributes last night poured in for the ‘hero’ who ‘never allowed others to define what he could achieve’.

A statement on behalf of his family said he continues to ‘inspire us all every day,’ adding that ‘in a world full of adversity, we must dare to dream.’ 

Broadcaster Dan Walker posted on X to ‘send all my love’ to the grieving family and said the rugby legend ‘taught us all so much’ with his ‘continued determination and desire to make a difference for others’.

Presenter and ex-footballer Chris Kamara posted: ‘What a trooper Rob was. He fought a real battle with MND. 

‘Rob raised awareness and funds, despite his condition, for other people to benefit from. The impact he leaves will be long lasting. RIP Rob what a hero.’

Paying tribute today. the MND Association said: ‘Our thoughts today are with Rob’s wife Lindsey, children Macy, Maya and Jackson, family and friends and the rugby community.

‘Rob, who played at number 7 for Leeds Rhinos, lived with this brutal disease in the public eye after choosing to announce his diagnosis shortly before Christmas 2019. 

‘He used every opportunity to raise awareness of the disease, speaking publicly, undertaking media interviews and opening his life up in two moving BBC documentaries My Year With MND and Rob Burrow: Living With MND.’

Fans gather outside Headingley Stadium in Leeds, after the death of Rob Burrow

Fans gather outside Headingley Stadium in Leeds, after the death of Rob Burrow

Flowers left in memory of former Leeds Rhino player Rob Burrow outside Headingley Stadium

Flowers left in memory of former Leeds Rhino player Rob Burrow outside Headingley Stadium

Rob with his wife Lindsey before the Rob Burrow Leeds Marathon on May 12

Rob with his wife Lindsey before the Rob Burrow Leeds Marathon on May 12

The charity called the rugby star a ‘consistent and passionate advocate’ in the touching statement.

Donate to the Rob Burrow fundraiser here 

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A GoFundMe set up in his honour has reached an incredible £120,308 in donations – with the top being a generous £4,823.

The team fundraiser paid tribute to the ‘fearless and respected’ player who was a ‘tough competitor on the field’ and ‘gave his all for the team’.

A statement posted on behalf of his family read: ‘It is with deep sadness that we announce the death of our beloved son, husband, father, brother and friend.

‘Rob has always been a true inspiration throughout his life, whether that was on the Rugby league field or during his battle with MND.

‘He never allowed others to define what he could achieve and believed in his own ability to do more.

‘The outpouring of love and support that Rob and the whole Burrow family have received over the last four and a half years meant so much to Rob.

‘In particular, the Rugby League Family and the MND community have rallied around Rob to inspire him, thank you for your support.’

They concluded the touching tribute by saying: ‘He will continue to inspire us all every day. In a world full of adversity, we must dare to dream.’

His family and former club posted a touching tribute on social media

His family and former club posted a touching tribute on social media

Kevin Sinfield holds his BBC Special Award alongside Rob Burrow during the BBC Sports Personality of the Year Awards 2022

Kevin Sinfield holds his BBC Special Award alongside Rob Burrow during the BBC Sports Personality of the Year Awards 2022

Broadcaster Dan Walker posted on X to 'send all my love' to the grieving family

Broadcaster Dan Walker posted on X to ‘send all my love’ to the grieving family

Piers Morgan called it 'incredibly sad news' as he posted in tribute

Piers Morgan called it ‘incredibly sad news’ as he posted in tribute

Presenter and ex-footballer Chris Kamara posted: 'What a trooper Rob was'

Presenter and ex-footballer Chris Kamara posted: ‘What a trooper Rob was’

The Leeds Rhinos expressed their ‘deep sadness’ at the news for their brave former team mate.

The rugby legend spent his entire club career with Leeds and made more than 400 appearances between 2001 and 2017.

Burrow was capped 15 times by England and played five Tests for Great Britain, but he was best known as part of the team that won the Super League in 2004.

It ended the club’s 32-year wait for a title, and he was then named Man of the Match in the Rhinos’ 2007 and 2011 achievements.

The team’s touching tribute last night said: ‘Rob inspired the entire country with his brave battle against Motor Neurone Disease (MND) since his diagnosis in December 2019. He passed away peacefully at Pinderfield’s Hospital near his home surrounded by his loving family after becoming ill earlier this week.

‘Burrow played his entire career with Leeds Rhinos and won every honour with the club as part of their golden generation. A hard working and dedicated player, his fearless performances made him one of the most respected players in the Rhinos ranks.’

Dan Walker posted on X in response to the sad news: ‘He was the little fella who made a massive impact on the pitch and an even bigger one off it. 

‘Rob Burrow taught us so much in the way he dealt with his MND diagnosis and inspired millions with his continued determination and desire to make a difference for others. Sending all my love to Lindsey and their kids, his sisters, his mum and dad and all those who will miss him so much.’

Piers Morgan called it ‘incredibly sad news’.

He posted on X: ‘A remarkable man who fought wretched Motor Neurone Disease with such courage, fortitude and determination. He raised so much money, and so much awareness, and helped so many other people. RIP Rob.’

BBC Breakfast editor Richard Frediani also posted to call Burrow ‘the greatest of men’ describing him as a ‘champion on and off the pitch’. 

The MND Association’s statement read: ‘In doing so much, he inspired support from so many. On the weekend of the Challenge Cup Final in October 2020, fans and supporters donated an incredible £70,000 to the MND Association. 

‘Just two months later, Rob’s former captain Kevin Sinfield CBE took on the first of four incredible challenges raising more than £7 million for MND charities, including the MND Association. 

‘Rob and Kev’s friendship made headline news around the world. Thousands of well-wishers, not just in rugby’s heartland, but across the country donated, took on fundraising challenges and pledged support in tribute to Rob’s bravery.

‘Rob’s contribution to rugby league and awareness of MND were recognised in the 2021 New Year’s Honours List when he was made an MBE and that same year Rob accepted the role of patron of the MND Association. Rob was subsequently awarded a CBE in the 2024 New Year’s Honours list.

‘It is testament to the strength of feeling people have for Rob that the support in his name has never wavered.

Burrow with his children, (left to right) Macy, Jackson,, Maya and his wife Lindsey Burrow (right) at the start of the Arena Group Leeds Mini and Junior Run 2023 in Leeds

Burrow with his children, (left to right) Macy, Jackson,, Maya and his wife Lindsey Burrow (right) at the start of the Arena Group Leeds Mini and Junior Run 2023 in Leeds

‘The MND Association is incredibly grateful to Rob and his family for helping to raise awareness of MND, and funds for the Association, by sharing the details of their journey and by inspiring so many people both within the MND community and the wider public.’

Burrow rose through the Leeds club’s Academy ranks to make his debut in 2001. 

In 2004, he was part of the Leeds team that ended a 32-year wait to win the Championship with victory in the Grand Final. 

It was the first of eight Grand Final wins for Burrow including winning the Man of the Match award in the 2007 and 2011 Old Trafford showpieces. The 2011 game included his breathtaking try that is still regarded as the greatest Grand Final try ever scored.

In total he made 492 appearances for the club, placing him in fifth in the club’s all-time list of career appearances. 

The rugby star won the Challenge Cup at Wembley in 2014 and 2015 as well as three World Club Challenges and three League Leaders Shields.

Touching tributes to the player on social media included one from the England Rugby account, which read: ‘Rest in Peace Rob’ with a prayer hands emoji and a broken heart.

Another called him a ‘hero’ and read: ‘He’ll never be forgotten. We’ll make sure of that.’  

A third read: ‘Hero. The definition of a legend. Thoughts with his family.’

The rugby star won the Challenge Cup at Wembley in 2014 and 2015 as well as three World Club Challenges and three League Leaders Shields

The rugby star won the Challenge Cup at Wembley in 2014 and 2015 as well as three World Club Challenges and three League Leaders Shields

The rugby legend spent his entire club career with Leeds and made more than 400 appearances between 2001 and 2017

The rugby legend spent his entire club career with Leeds and made more than 400 appearances between 2001 and 2017

Last month, Burrow paid tribute to his wife as he said he’s played some tough people in his rugby career, but no one is ‘as strong’ as Lindsey.

A married father of three young children, he was unable to talk but could articulate his thoughts through Eyegaze, a device which translates blinks into letters and then builds them into words on a screen.

The former captain of the Leeds Rhinos and member of the British rugby league teams paid tribute to his supportive wife Lindsey on BBC Breakfast.

Lindsey cared for Rob, their three children and works as an NHS physiotherapist. She has previously spoken about the ‘huge emotional and physical challenges’.

Her husband told BBC Breakfast: ‘I’m trying not to be soppy but some of the things that Lindsey does for me is proof I’ve found my one and only.

‘I’ve played with some strong players in my rugby career but no one is as strong a personality than Lindsey. I hope that will inspire people to be more like her…what a world that would be.’

In 2019, the Prince of Wales told him that ‘we’re all so proud of you’ while visiting Headingley Stadium in Leeds – to present the rugby legend with his CBE.

The royal also presented Rob with the medal – still in its box – as he lauded the former athlete’s legacy and efforts in campaigning.

‘Thank you and congratulations – for all the inspirational work you’ve done, Rob,’ Prince William said as the sporting icon was surrounded by his beaming wife and their children in a video shared by BBC Breakfast on X.

‘You’ve been amazing, you really have and everyone’s so proud of you.

‘We’ve all been following your case. You’ve changed so many people’s lives with MND with what you’ve done. We’re all so proud of you.’

WHAT IS MOTOR NEURONE DISEASE? 

Former rugby league player Rob Burrow was among several players diagnosed with motor neurone disease (MND) in recent years.

Burrow, who has died aged 41, was just 37 and had three children under the age of eight with wife Lindsey when he made the announcement on December 19 2019 that he had MND.

Here are some key questions and answers about the degenerative disease:

What is MND?

It is a life-shortening neurological disease which affects the nerves that control movement so muscles no longer work, according to the MND Association.

The charity says these nerves – motor neurones – control muscle activity such as walking, speaking and swallowing.

But as they are attacked, the brain’s messages gradually stop reaching muscles, leading to weakness and wasting followed by breathing difficulties.

The MND Association says some people also experience changes to their thinking and behaviour.

– What are the early signs of MND?

The NHS says MND symptoms occur gradually so may not be obvious at first.

Early symptoms include weakness in ankles or legs, slurred speech, difficulty swallowing food, a weak grip, muscle cramps and twitches and weight loss.

– How is MND treated and can it be cured?

There is no cure for MND and the disease will progress over time, according to the MND Association.

How long people live with the condition varies but some survive for years, and even decades, such as Professor Stephen Hawking, who lived for more than 50 years after being diagnosed aged 21.

MND can be treated with occupational therapy, physiotherapy, a medicine called riluzole and medication to relieve muscle stiffness and help with saliva problems, the NHS said.

– Who does the condition affect?

According to the MND Association, up to 5,000 adults in the UK have the disease at any one time.

The organisation says it can affect any adult at any age, but it is more likely to occur in people over the age of 50.

– What causes MND?

The health service says it is caused by a problem with cells in the brain and motor neurones.

It is not known why these cells and neurones gradually stop working over time.

The NHS says having a close relative with MND – or a related condition called frontotemporal dementia – can sometimes mean you are more likely to get it, but in most cases it does not run in families.