Motor neurone disease exhibition inspired by Leeds Rhinos legend Rob Burrow MBE launches in Leeds Train Station

The exhibition shares seven unique stories of people being affected by MND, which Rob was diagnosed with in 2019. It is set to embark upon a tour of key locations across the city with the aim of raising awareness of the condition and generating funds for the Rob Burrow Centre for MND.

Rob and his wife Lindsey were in attendance for the launch, as were numerous others who have experienced MND or seen the cruel nature of it up close. Lindsey told the Yorkshire Evening Post: “I think the Rob Burrow MND care centre will have a lasting legacy for people who are diagnosed today and in the future. It won't make the diagnosis any easier but what it will do is give people the reassurance that they are in the best possible care and in an environment that meets their needs, which is really important.

“When Rob first went public with his story, part of that was the frustration of ‘why isn't there any better treatment, why isn't there any effective treatments, why isn't there a cure for this disease?’. You hear about other families and their stories and it makes you want to make a difference and help those other families.”

In the face of immense hardship, a community of people with shared experiences have rallied. Among those featured in the exhibition is Jude de Vos, who lost her son Jody to MND in 2017 and believes addressing isolation will be a key benefit of the Rob Burrow Centre for MND.

She said: “With this centre, it means it will all be in one place. All the support is there. You'll have people around you who also are experiencing it, so you're not so isolated. One unit would be amazing, I wish it was there for Jody and I.

"It would have helped us emotionally as well as physical. You don't expect your child to die, it was absolutely heartbreaking. Every day, there was only me there. I felt very isolated and emotionally, some days I just needed someone to help me.

"After Jody died, I just felt incredibly lost. It was like a door slammed shut. The patient had died, everyone went and I was alone. I was suicidal. Two and a half years later, the paramedics and emergency teams were involved with me because I just didn't want to live.”

The number of stories shared in the exhibition, seven, is also the number Rob wore on the back of his shirt during his illustrious rugby league career. The exhibition is being presented by Leeds Hospitals Charity, who are raising funds for the creation of the new specialist MND centre.

Once up and running, the centre will be operated by Leeds Teaching Hospitals NHS Trust and will be the first of its kind in Europe. Esther Wakeman, chief executive of Leeds Hospitals Charity, said: “Rob is an absolute hero to the MND community for the courage he, and his family, have shown. We are just under halfway to our target to build the new Rob Burrow Centre for Motor Neurone Disease; the hope is this exhibition inspires people to help get us to the finishing line.”

The Samaritans helpline operates 24 hours a day and can provide support on 116 123.

Leeds Mind Suicide Bereavement Services offer compassionate support for people bereaved or affected by suicide, including if you:

· Have lost anyone to suicide, such as: a friend, colleague or family member; someone you know professionally or an acquaintance

· Think someone ended their own life, even if an inquest has not been held or did not determine suicide as cause of death

· Have been affected by suicide but do not identify as bereaved, e.g. if you witnessed a death, or were involved through your work

· Were affected by a suicide months, years or decades ago

Call 0113 305 5800 or email [email protected].