Luke, 35, living with MND set to conquer Hadrian's Wall

07 June 2024

A DOCTOR diagnosed with motor neuron disease at just 34 said he will be thinking of late rugby legends and MND campaigners Rob Burrow and Doddie Weir as he takes on a gruelling 84-mile cross-England trek the length of Hadrian’s Wall to highlight the need for research into the devastating condition. 

 Luke Hames-Brown, now 35, hopes the challenge will help create ‘special memories’ with wife Kate – who will be with him every step of the way – culminating in their second wedding anniversary. The couple, who married almost two years ago, will be joined by close friends and family, who will also provide support throughout the eight-day challenge (June 8-15). 

Luke, who lives near Oxford, aims to raise money and awareness for My Name’5 Doddie Foundation, the charity set up by former Scotland and British and Irish Lions rugby legend Doddie Weir, who died from MND in 2022. The foundation is now well on its way to committing more than £17 million to research. Luke will also donate funds to the MND Association, another charity funding research and supporting people living with MND.

Luke said he will also be inspired by the memory of tireless MND campaigner and rugby league legend Rob Burrow, who died on Sunday at the age of 41. Plans were in place for Luke to meet Burrow following his Hadrian’s Wall challenge. 

The Hull York Medical School graduate, who met wife Kate, 38, also a doctor, while working in an emergency department, received his devastating diagnosis in April last year. He had first noticed signs around 12-months earlier – including a weakness in his legs and a lack of balance – but the diagnosis took some time as medics worked to identify the cause. Eventually, Luke and Kate received the news they had suspected, but nobody wants to hear – ‘you have MND’. 

 “We sat by a river and just cried,” Luke said. “I'd recently had a patient receive an MND diagnosis, and I knew what it meant. My immediate thoughts weren’t about me to be honest, I was thinking about Kate, my parents and our families, I wanted to make sure they’d all be okay. 

 “Initially, I needed some time off work to think and process what was happening, and after this I thought – I’m not going to let this thing beat me. It sounds simplistic, but I wanted to be as positive as I could. I thought that, if I could deal with this as positively as possible, then that would help everyone else around me to deal with it too.”

 Luke refused to let his MND prevent him from achieving his goals, and the volunteer search and rescue team medic fulfilled a lifetime ambition last year when he was selected to join an expedition to Mongolia supporting archaeological, botanical, and zoological research, as well as the delivery of dental care to the local population. The trip had twice been delayed, first due to Covid-19, and then due to Russia’s invasion of Ukraine. The rearranged expedition came following Luke’s diagnosis, but he was set on going, and organisers agreed he should make the trip. 

 “They said if I was happy to go, they were happy for me to go. I’m so glad I did, it was incredible. I had hoped that Mongolia would be the start of a career combining general practice and expedition medicine, unfortunately due to the progressive nature of MND, I won’t now have that, but I am so pleased that I still went there, it was a really special experience.”

Luke also sets smaller, day-to-day goals that help him maintain a routine and as normal a life as possible, including tending to chickens and their allotment at home, and taking part in a weekly 5km parkrun with Kate in a nearby town.

 “I used to run a 5k in under 25 minutes, now my goal is to get to the end without stopping. I use poles and can break an hour on a good day,” he said. “I know my MND is going to get progressively worse, and I have to accept greater vulnerability, but I won’t let it stop me doing what I love, I just do it differently. It’s a recalibration of what I can and want to achieve each day.”

Luke retired from his job as a GP earlier this year to spend more time with his family following his diagnosis. During the challenge, the outdoors enthusiast, keen hillwalker, and snowboarder, who has also enjoyed climbing and surfing, will take on around 10 miles per day, distances that seemed easy pre-diagnosis, but now test his body to its limits.

His condition is progressing relatively slowly, but significantly affects his ability to move effectively, exaggerates aches and pains, impacts his balance – which makes it difficult and dangerous to walk downhill in particular – and causes him to tire very quickly.

Luke and Kate, who got engaged in a romantic hilltop setting in the Chilterns in 2021, have so far raised almost £20,000 but the couple explained that the motivation for the challenge extends beyond that. 

“I want to raise as much money as we can to help further research into MND and support those affected by the disease,” Luke said. “The way Rob Burrow, like Doddie Weir, approached his MND was an inspiration for me, and our challenge, the funds we raise, and the awareness we generate will be in his memory as well. I will be thinking of him along the way for sure. 

“More than that, I also hope that people out there who are perhaps struggling with difficult moments or news in life might see me taking this challenge on and believe they too can build memories and experiences, face adversity head on, and not let it stop them doing what they love.

“Following my diagnosis, I used to find it hard seeing others in my position because it reminded me of where I am headed. Now I find other’s stories uplifting, motivational, inspirational, and if I can provide that to even one person with MND – or facing any challenge – by doing this, it’ll all be worth it.”

Kate added: “Luke has always put other people first – in his job, in his personal life, through his volunteering, and more. His first thought after diagnosis was about me and our families before himself, it’s the way he’s always been. He is taking this challenge on to help others, and to provide us all with cherished memories of what we have always loved doing with him. He’s a special person who does special things, and his MND won’t stop that.” 

MND is a disease which affects the motor neurons of the nervous system. It is life shortening and mostly progresses rapidly. Approximately 1,100 people are diagnosed with MND every year in the UK. Up to 5,000 adults in the UK are affected at any one time. Life expectancy post diagnosis is typically two to three years, although the rate of progression varies from person-to-person and some people can live far longer. 

There are currently no effective treatments and no cure, but researchers – including several projects funded by My Name’5 Doddie Foundation – are hopeful a breakthrough is possible. Earlier this year, MNDF pledged to commit a further £6m to vital research projects through its pioneering Catalysing a Cure Research Strategy.

Paul Thompson, director of fundraising at My Name’5 Doddie Foundation, said: “Luke’s approach to MND and this challenge is an inspiration to all of us in the MND community. Doddie didn’t let MND stop him doing what he loves, and Luke is doing just the same. His efforts and approach to this illness demonstrate the urgency required to find effective treatments and cures for MND, and we are dedicated to achieving it. We all wish him the best of luck, and will be following his journey every step of the way.”   

To donate to Luke’s MND Awareness Hadrian’s Wall Challenge, visit donate.giveasyoulive.com/fundraising/lukes-hadrians-wall-challenge. To find out more about My Name’5 Doddie Foundation, visit myname5doddie.co.uk/.