More Needs Doing’ campaign highlights need for specialist Motor Neurone Disease (MND) Centre in Leeds
To mark Motor Neurone Disease Awareness month, Leeds Hospitals Charity have launched their ‘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, Cause UK continues to support the charity in 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.
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, 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 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 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.”
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.
At Cause UK, we’re proud to have helped tell Jody and Jude’s story in the Yorkshire Post, Yorkshire Evening Post, BBC Radio Leeds, ITV Calendar, The Scottish Sun, Border Telegraph and Peeblesshire News.
You can support the Rob Burrow Centre for Motor Neurone Disease Appeal by making a donation through Leeds Hospitals Charity’s website.