On Global MND Awareness Day, Leeds Hospitals Charity has launched a new campaign to raise awareness and funds to build the Rob Burrow Centre for Motor Neurone Disease.

As part of the campaign, we hear from two patients who are cared for by the clinical team at Leeds Teaching Hospitals NHS Trust, who run the current MND service at Seacroft Hospital where Rob was treated, Rob Smitten and Nonly Reynolds.

Friday 21st June, will see millions of people from the motor neurone disease (MND) community will mark Global MND Awareness Day. Across the world, people will recognise the impact MND has, not only on the person living with the condition, but also their loved ones.

It is also an opportunity to remember those who have sadly died of MND, and will be the first since Rob Burrow’s sad death earlier this month.

Read more: Our Tribute to Rob Burrow CBE

Nonly and Rob are bravely sharing their stories to help Leeds Hospitals Charity raise the final £700,000 needed to cross the finish line of their appeal to build a centre in Rob’s name at Seacroft Hospital.

Over the past ten years, referrals to the Leeds MND centre have doubled, with 40 new referrals each year. The new centre will provide a more suitable environment to continue to provide the best quality service to their patients, in addition to providing a positive space for their families and carers and offering the team better facilities tailored to their patients' specific needs.

43-year-old Nonly, from Ilkley, was diagnosed with MND in May 2022 when her daughter Nandi was just two years old. Nonly’s husband Carl has given up his job to be her sole carer.

Nonly spoke to us about what it’s like living with MND and why the centre means so much to her family:

“My condition deteriorated quite rapidly after being diagnosed with MND, and last year my husband had to give up work to care for me and our young daughter. I am living in the worst nightmare of my life with MND, one of the hardest parts is that I can’t even hug my little girl.

“For me, the centre is really important because it will give us a place to be with members of the community, to meet other MND warriors and share our different experiences and journeys.”

Nonly in her wheelchair with husband Carl and daughter Nandi standing next to her

Read more: Nonly's Story: Global MND Awareness Day

68-year-old Rob Smitten, from Wakefield, was diagnosed in June 2022. He has been actively involved in stakeholder engagement sessions with architects Corstorphine & Wright to help design the new Rob Burrow Centre for MND. 

Rob told us about his experience at the current centre and the difference a bespoke building will make to patients like him:

“It was like being struck with a bolt of lightning when I was told I had MND, I was in total shock, it was completely unexpected. So many questions go through your head, what will happen next? What do we do now? Is this the end?

“When I first went to Seacroft it felt as if as MND patients we were pushed at the back of the hospital, it’s not very accessible and through long corridors. Dr Jung and her team are amazing, they are so dedicated, warm and understanding, and they deserve a better environment where they can provide us with the best possible care.

“The new building will be a huge morale booster, all of the facilities have been designed with patients and staff in mind, it will make it a more positive experience in a world-class facility.”

Rob Smitten with Dr Agam Jung and Corrine Spence holding designs of the Rob Burrow Centre for MND outside the hoardings at Seacroft Hospital

Read more: Rob's Story: Global MND Awareness Day

Construction company I&G began building work on site earlier this month, and it is hoped that the centre will officially open its doors in Summer 2025. 

The charity is encouraging the public to get behind their appeal to reach the £6.8 million target to build a centre that will be a lasting legacy for its patron Rob Burrow.

Paul Watkins, Director of Fundraising at Leeds Hospitals Charity said:

“We’re so close to crossing the finish line of our appeal to build the Rob Burrow Centre for MND thanks to the incredible support we’ve received since first launching in 2021. Following the sad death of our patron Rob Burrow, we have been overwhelmed by the heartfelt tributes from our supporters and have seen over a quarter of a million pounds donated in a matter of weeks.

“This is a real testament to the lasting impact Rob had not only on the people of Yorkshire, but also across the globe. It is a real privilege that we’re able to fund the building of this centre in his name, it will be an incredible legacy that will make a real difference to people living with MND and their families across our region for many years to come.”