To mark Motor Neurone Disease Awareness month, we've launched our ‘More Needs Doing’ campaign to help raise awareness of MND and highlight how the Rob Burrow Centre for Motor Neurone Disease will make a difference to people affected by the life-limiting condition.

Throughout June, we're sharing stories from people living with MND in our region, staff working at the Leeds Motor Neurone Disease Care Centre, and families impacted by the disease.

The current MND centre at Seacroft Hospital, run by Leeds Teaching Hospitals NHS Trust, is located on a busy multi-purpose ward not built with MND patients in mind and without the ability to be fitted with equipment and facilities for those who are physically impaired.

Jude De Vos is one of the people bravely sharing her story as part of Leeds Hospitals Charity’s ‘More Needs Doing’ initiative, her son Jody sadly died of MND four years ago, he was just 38 years old.

Jody lived in Australia when he was first diagnosed with MND and shortly returned home to Holmfirth to live with his mum Jude, who became his full-time carer.

Jude told us that a purpose-built centre would have made a huge difference to both her and her beloved son:

“When I heard about the Rob Burrow MND centre, it was like a gift from heaven. I really felt, if only that had been here for Jody, if only that had been there for me, it had been there for his two sisters. If only the centre would have been there four, five years ago it would have made a huge difference to our lives.”

On the 22nd of June, a day after Global MND day, Jude will hiking 4,413 ft to the peak of Ben Nevis to raise funds for the Rob Burrow Centre for MND appeal in memory of Jody.

Over the past ten years, referrals to the Leeds MND centre have doubled, with 40 new referrals each year. The care centre has a growing team of specialist care providers, all working together holistically to provide holistic family-centred support.

Jenna Jordan, Clinical Nurse Specialist at Leeds Teaching Hospitals NHS Trust said:

“There’s a lovely family and community feel about what people are doing to raise vital funds and awareness for motor neurone disease and this mirrors the family-focused care approach that we give to our patients. We’ve heard about and taken part in some truly inspirational fundraising activities. But we’ve a way to go before we can deliver our care in an environment that better suits the very different and demanding needs of those we care for. A new centre will provide an uplifting space for those who have been given very bleak news. It will enable options and choices for MND patients in relation to the life-prolonging technologies available to them and most importantly it will be accessible for all their needs, and for their support network too. It will also be a centre for quality and excellence, reflective of those who work within the service.”

Since the Rob Burrow Centre for MND appeal launched in September, over £2 million has been raised thanks to heroic fundraising efforts from the people of Leeds, Yorkshire and beyond.

The initial plans for this specialist centre include an attractive central courtyard garden, large internal rooms with plenty of natural light and ample shared spaces for patients and their families and carers to relax before, during and after treatments.

Esther Wakeman, Chief Executive of Leeds Hospitals Charity said:

“Our ‘More Needs Doing’ campaign hopes to raise the profile of MND and the devastating impact it has on sufferers lives and their families. Hearing about the heartbreak that families like Jude’s have gone through reinforces why we need a specialist centre in Leeds, to help people living with MND and their families have access the best possible care and support.”


More Needs Doing to help families like Jude's, donate here