YEP and Leeds Hospitals Charity launch campaign to raise the £5m needed for The Rob Burrow Centre for Motor Neurone Disease

Today, the Yorkshire Evening Post has teamed up with Leeds Hospitals Charity to launch a campaign to raise the £5m needed for the centre, which will be named after him, and is set to become a flagship centre for both treatment of patients with motor neurone disease (MND) and also research into the condition and possible cures.

The fund-raising effort has been kick-started by good friend and former Rhinos team-mate of Rob Burrow, Kevin Sinfield.

Kevin completed a 101 mile run last week within 24 hours where he ran from Leicester's Mattioli Woods Welford Road stadium on Monday morning to Emerald Headingley Stadium, arriving to a stadium of fans and well-wishers first thing on Tuesday morning.

His initial target was to raise £100,000 to split between the appeal and the Motor Neurone Disease Association - but within less than a week he has raised £1.8m with donations still flooding in.

Leeds Hospitals Charity said it would be wonderful to have topped the total by Christmas and Lindsey Burrow, Rob's wife, said she would love for the centre, which was announced in September, to be built as soon as possible so he can open it himself.

She told the Yorkshire Evening Post: "£5m is a lot of money. I think, I hope it is doable.

"When Rob was diagnosed, he was told he would have one to two years. It is two years in December, his health seems stable. I don’t know how long we have got left but I would love for him to be able to open that centre because it is named after him.

"The sooner we can get this up and running the better. Now is the right time, the government has pledged £50m into research, now is the time to get momentum and get this campaign going."

Not fit for purpose

The current centre for MND care in Leeds is based in Seacroft and was originally built in the early 20th century with care for infectious diseases in mind. However, the building is showing its age and while technology relating to the care needs of people with MND have moved on, the environment remains the same.

It is on a busy multi-purpose ward, there is no private space for patients and families to be alone after receiving life- changing news, there is a long walk from the car park to the hospital which can be challenging for patients with mobility issues, the wheelchairs especially adapted for MND patients are too wide for the door frames of the centre and facilities, such as rest areas and toilets are unable to be equipped with the hoists and aids needed for patients with mobility impairments.

Over the last ten years, both the number of people with MND referred to the centre and the size of the care team itself has doubled.

The centre typically directly cares for 80 patients at any one time, with around 40 new referrals over the course of a year. Most of these patients are from Leeds, with around 80 per cent being Leeds residents and 20 per cent from elsewhere in the region. Patients from the region also access the centre for neurology second opinions.

In 2020/21 the total case load was 143 patients.

It is also these other patients that Rob Burrow is fighting to help.

Lindsey said: "The ward at the minute is not fit for purpose. The clinicians, staff, nurses, consultants - they are all fantastic and brilliant at what they do but it does not meet the needs for patients with MND.

"This will really make a difference to patients and families. Nobody wants to go but this will be a safe haven for patients and make that journey a little bit easier for them. For us it will not change the diagnosis but a nicer environment will give hope.

"The bigger picture is that it was never about Rob, it was for other people. When you get told you have MND you have questions, but they don’t know the answers. There are no effective treatments or cures. Why is there not more research, why with all this technology and science these days, why can’t we find a cure? That is a big driver."

How people are getting involved

Whether it is hundreds of thousands from an epic challenge like Kevin Sinfield's 101 miles or an anonymous donation of £10 - it will all make a huge difference to the campaign. One person even donated £1 as that is all they could spare from their disability allowance and one woman who pledged £20 apologised because she couldn't afford more.

Esther Wakeman is the chief executive of the Leeds Hospitals Charity and said there had been a huge uplift in people wanting to help. Here is how you can get involved.

She said: "We have seen a huge uplift in people doing their own fundraising. We have got a lady doing a walk in memory of her son who died from MND and a former rugby referee doing a mile a day swim. There are all sorts of activities that people are doing.

"Not everybody will run a hundred miles, people might want to make a gift or leave a donation in their will. There are lots of ways that people can support the appeal.

"It is not just about £5m, it is how do we do it as quickly as possible because it will make such a difference to families and people like Rob - but we need everybody to get behind us."

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